The Inflation Reduction Act (IRA) signed into law by President Biden in August 2022 included more than $891 billion in climate spending, tax credits, and other legislative reforms, many of which will directly impact patient access and affordability.

The health care provisions of the IRA mainly apply to Medicare patients, though a few impact the commercial insurance market as well.

These provisions include:

• A monthly out-of-pocket cap for insulin
• An annual cap on spending for all Medicare beneficiaries
• Granting the Secretary of Health and Human Services (HHS) the authority to negotiate drug prices for a select group of medications
• An annual cap on premium increases for Medicare Part D
• Penalties assessed in drug prices are increased above the annual inflation rate

With provisions impacting people with chronic disease, the Global Healthy Living Foundation (GHLF) sought to learn more about what our patient community knows about the IRA.

Of the 673 respondents:

• About half (42 percent) had heard of the IRA
• 45 percent had not
• 13 percent were unsure

Of those who had heard, the overwhelming majority (91 percent) had heard about it on the news.

The poll then asked respondents about what they’ve heard about how the IRA affects health care. Fifteen percent had not heard of how the IRA affects health care; others were able to select all that apply:

• 71% heard of the monthly out-of-pocket cap for insulin
• 63% heard of the increased ability to negotiate Medicare drug prices for certain medications
• 44% heard of the limits on out-of-pocket spending for people on Medicare
• 29% heard of the penalties for drug manufacturers if they raise drug prices faster than inflation
• 9% heard of the extensions for people who get premium tax credits for the Affordable Care Act through the individual marketplace

Here’s what you need to know about these provisions and when they will take effect.

Spending Caps

The IRA implemented two major spending caps: one is a monthly cap on out-of-pocket costs for insulin, and the other is an annual spending cap.

Insulin prices were capped at $35 per month for all Medicare beneficiaries — effective January 1, 2023, for people enrolled in Medicare Part D and effective July 1, 2023 for Medicare Part B and Medicare Advantage plans.

Notably, earlier this year, the three insulin manufacturers Eli Lilly, Novo Nordisk, and Sanofi announced they would cap insulin prices for all patients, regardless of insurance status, to $35 per month. The new manufacturer policy will make it easier to follow one set of rules than to have multiple pricing structures for the different types of health plans.

“The action taken by the three biopharmaceutical companies is important as they put the patient’s well-being before profits,” says Robert Popovian, PharmD, MS, Chief Science Policy Officer, at GHLF. “The IRA will codify their actions into law, which will help patients now and in perpetuity.”

For the annual cost cap, the IRA has implemented a ceiling for out-of-pocket spending for Medicare Part D at $2,000. The policy ensures that starting in 2025, patients on Medicare will never have to shell out more than $2,000 annually for their health care costs. This significantly reduces the financial burden for patients, especially considering that 2019 data suggests that nearly 1.5 million Part D participants surpassed the annual catastrophic coverage threshold of $5,100 in total out-of-pocket expenses.

Drug Price Negotiation and Innovation

For the first time, the IRA allowed the federal government to negotiate drug prices for Medicare for some of the most expensive drugs on the market for a set number of years.

The provision mandates that the secretary negotiates Medicare drug prices for a select list of high-priced, single-source drugs that have been available on the market for a set number of years.

The Centers for Medicare and Medicaid Services recently announced the 10 drugs that will be part of Medicare’s first round of drug price negotiation. The complete list includes:

• Eliquis, for preventing strokes and blood clots
• Jardiance, for diabetes and heart failure
• Xarelto, for preventing strokes and blood clots
• Januvia, for diabetes
• Farxiga, for chronic kidney disease
• Entresto, for heart failure
• Enbrel, for arthritis and other autoimmune conditions
• Imbruvica, for blood cancers
• Stelara, for Crohn’s disease and other autoimmune conditions
• Fiasp and NovoLog insulin products, for diabetes

According to HHS, these drugs accounted for 20 percent or $50.5 billion of total Medicare Part D gross covered prescription drug costs between June 1, 2022, and May 31, 2023.

Patients will not feel the impact just yet. CMS is slated to publish the prices for these selected drugs on September 1, 2024, with the new negotiated prices becoming active on January 1, 2026.

Moving forward, manufacturers must also pay rebates to Medicare if they raise their prices above the inflation rate.

The IRA also provided a three-year extension for people who receive premium tax credits for the Affordable Care Act (ACA) through the individual marketplace, thus reducing the price of health care for millions of patients nationwide.

Navigating the Uncertainties of New Drug Price Controls and Their Potential Impact on Autoimmune Patients

Recognizing the significant impact on those with autoimmune diseases, we reached out to our CreakyJoints community on social media. We wanted to hear directly from you: What questions and concerns do you have regarding the IRA and these drug pricing negotiations?

A common question among your patient peers: “Is there a list of the next wave of drugs to be included? And if so, are any of these drugs on the next list designed to treat inflammatory arthritis?”

While we don’t know yet which drugs are next on the list, we do know that over the next two years another 30 medications (15 per year) will be selected for negotiated prices, beginning in 2027 and 2028, and up to 20 more drugs for each year after that.

IRA has the potential to drastically reduce drug prices for some of the most common and most expensive drugs on the market and hopefully lead to savings for patients. While cost reduction is a key goal, according to government agencies (e.g., Congressional Budget Office), there will be a reduction in the number of new innovative biopharmaceuticals introduced in the market in the next few years. In addition, IRA does not guarantee that any savings will reach patients directly at the point of sale at the pharmacy counter.

Finally, due to changes in Medicare Part D benefit design, seniors will have potential degradation in benefits as they will face increased administrative burden in accessing life-saving medicines. As IRA gets a foothold, patients who previously waited five years for a new treatment must now wait 10, which could impact their quality of life.

“Like any legislation, there are benefits and risks for patients,” says Popovian, noting that seniors will gain some financial protection, with caps on insulin prices and no out-of-pocket costs for vaccines. “Unfortunately, the risks involved with IRA cannot be ignored — the federal government and private sector analysis are unequivocal that the number of innovative medicines coming to the market will be curtailed in a meaningful way, putting at risk the possibility of finding cures for various diseases.”

In addition, IRA doesn’t help patients with out-of-pocket spending at the pharmacy counter. “The federal government failed to allow seniors to benefit directly from multibillion dollar concessions siphoned by the pharmacy benefit management companies from the biopharmaceutical companies,” explains Popovian. “Unlike other segments of the health care system, patients do not benefit from the prices negotiated on their behalf by their insurers or pharmacy benefit managers (PBMs). IRA could have solved that problem but did not.”

Become a 50-State Network Advocate

Joining the 50-State Network takes just a few minutes, and then you will be plugged into a nation-wide and state-by-state community of other like-minded people who are living with chronic conditions (or love someone who is). Together, we share our strength, experience, wants and needs as a patient community so that we can raise our voices with our healthcare decision-makers. Sign up today.

Living with a chronic illness is a multifaceted challenge that extends beyond managing symptoms and treatment. It often involves building up enough resilience to handle the stress of navigating the health insurance system.

From understanding the intricate details of coverage to dealing with roadblocks like prior authorizations and denials, managing health insurance can be a full-time job.

In a recent #CreakyChats discussion, we explored various facets of health insurance with our members. Topics ranged from the emotional toll of insurance-related stress to strategies for overcoming insurance hurdles like prior authorization and denials. We also discussed how to talk about insurance with health care providers and how to raise awareness about these challenges to improve health care access.

The insights gleaned from our #CreakyChats discussion underscore the vital roles that a supportive network, proactive communication, and self-advocacy play in managing health challenges. We hope these shared experiences and strategies not only inspire you but also help you feel less isolated in your journey.

The Fight for Medication Access

Access to medication is a critical issue that many people don’t anticipate until they’re diagnosed with a chronic illness. And often, the struggle doesn’t end with a diagnosis; it continues as they try to get the treatment they need.

“I never knew access to medications would be an issue until I was 35 years old and diagnosed with my first chronic illness. It only got worse from there! The insurance companies continued to fight against 75 percent of the meds my providers felt would benefit me the most.” — JP S.

“The what if really gets you. What if I don’t get my medication on time? What if they decide I need something else? What if my doctor doesn’t respond? It can be stressful because so much is out of your control.” — Eddie A.

“It drains so much of my mental energy. I feel frustrated, angry, and often, left in tears. The unnecessary stress exhausts me to the point I withdraw from being around my loved ones and want to be left alone. I just don’t want anyone to see me in this state of mind.” — JP S.

Building Your Support Network

Support is essential when navigating the confusing world of chronic illness and health care. The emotional and informational support from a community can make all the difference.

“Get people in your corner. Doctors, friends, family, internet friends. Whoever you have to help you — you don’t have to be the only one fighting and there are people out there who can help.” — @maddieles

Working With Your Doctors

The best way to avoid frustrations and roadblocks is to be proactive. Know what steps you need to take and how long they might take so that you’re not left in the lurch.

“My rheumatologist or other doctors usually bring it up and try to help with getting the prior authorization going and if not, I bring it up and ask about a timeframe and what I need to do. I leave the appointment with a plan.” — Shelley F.

“I have learned that asking the right questions is THE most important thing. Each person in the cog thinks you know what they do. I also have to start with the simplest solution to the problem and work outward to the most complicated. That saves a lot of time.” — @UnexpctdAdvocate

Hurry Up and Wait: Patience Is Key

Navigating the health care system often feels like a lesson in patience, as waiting — whether on the phone for insurance authorization or for a doctor’s reply — becomes an inevitable part of the journey.

“I try to take notes of everything I’m told. A couple of years ago I had to stay on the phone about three hours being on hold and transferred. I was not hanging up without an answer. You have to be prepared to hurry up and wait.” — Eddie A.

“Adjusting my expectation to just planning to be on hold for hours has helped lower the frustration some.” — Elisa C.

Be Your Own Advocate

Managing chronic illness involves more than merely adhering to medical advice; it also calls for active self-advocacy in your health care journey.

“We have to be our own advocate. Besides, every doctor’s office has different processes. It’s better to be informed.” — Jae W.

“We are our own best health advocates. We have to be, no one else is going to fight for us. It’s just so exhausting, enraging. That time, effort, and energy never gets made up though… The fight and the diseases all get intermingled, it can be overwhelming.” — @jessupatlarge

“Use your voice in as many ways as possible. Social media. Speaking to people at insurance and pharmacy. But politicians need to be made aware. This won’t change unless companies are forced to. It shouldn’t be this difficult.” — Eddie A.

Join Our Monthly #CreakyChats

Our monthly, patient-driven Twitter discussion, #CreakyChats, explores topics that are important to the chronic disease community. During a one-hour moderated chat, we provide a space for people to discuss pressing issues facing the arthritis/chronic disease community. You don’t need to be a Twitter pro to join.  

During #CreakyChats we encourage everyone to share their strengths, challenges, and experiences — that is how we can help and support people as they navigate life with chronic disease.  

“I could have had my grandparents a lot longer than I did had they been treated properly for their conditions,” says Ashley Krivohlavek, whose mother is more than one-half Cherokee, making Ashley a quarter Cherokee.  

Skipping through memories of her maternal grandparents on the reservation in Salina, Oklahoma, Ashley inevitably recalls being around 3 years old and sitting beside her grandmother in a medical clinic waiting room for what seemed like endless hours. Back then, there were no scheduled appointment slots; it was strictly a first-come, first-served system. If you arrived after 9 am, you were too late to be seen that day.  

“She didn’t know how to drive,” Ashley says, describing her grandma. “She was blind from glaucoma by that point, so she never needed to learn. I think she only made it to eighth grade before she had to take care of her family — her brothers and sisters — from her mom’s illness.” 

When asked about any strengths or benefits of living remotely, at first Ashley found it challenging to think beyond the hardships so etched into her memories and stories told to her by her family members. “Family is at the center of everything,” she shared. “I think living on the reservation and being close to people that are the same as you, and are going through the same struggles as you, are of benefit because you can help each other out.” 

Differences in Treatment Across Generations

Ashley’s maternal grandfather was diagnosed with rheumatoid arthritis, but he never received proper treatment, she explains. “He only had his joints drained of synovial fluid,” she recalls. “He walked with a cane and was disabled.”    

Now 39, Ashley lives with psoriatic arthritis (PsA), Raynaud’s, and polycystic ovary syndrome (PCOS). She can’t help but contrast her own treatment experience in Tulsa, Oklahoma, with the lack of treatment her grandparents received on the reservation. She attributes the dramatic difference to the extensive resources available to her in a larger city.    

“When I go to see my GP, at the Creek Nation, it’s in a larger metropolitan area,” Ashley explains. “It’s in Tulsa, Oklahoma, versus Salina, Oklahoma, which is a blip on the map — you blink and you miss it. That right there is a problem. I get treated differently just because I’m in a metropolitan area. I’m really thankful that I’ve got this person as my doctor, but again, they move around a lot. You never know if you’re going to be able to keep that physician long-term.” 

Underrepresentation in the Medical Field

Native Americans and Alaskan Natives make up only 0.4 percent of the physician workforce, making it unlikely for a physician to be paired with a patient of the same background. 

A 2022 study published in JAMA highlighted the representation of American Indian and Alaska Native individuals in medical training. Compared to their white peers, American Indian and Alaska Native individuals had 63 percent lower odds of applying to medical school. However, research shows that having shared identity in race and ethnicity between patient and physician can lead to increased rates of patient satisfaction and improved communication between physicians and patients.

Ashley speaks to the variability in health care providers on reservations. “A lot of doctors from other countries do their practice hours on the reservation. You never have a regular general physician (GP); you see whoever’s there and it switches all the time,” she says. “You just get who you get.” 

Remembering the Past to Change the Future

It’s critical to remember and talk about the past. “Even though you will think the Trail of Tears was in the middle of the 1800s, those impacts are still lasting,” she says. “They’re still there. A wave reverberates through the generations.” The Trail of Tears was when the Cherokee Nation was forced to move from their homes in the southeastern United States to Oklahoma in 1838-1839, because of a law signed by President Andrew Jackson called the Indian Removal Act of 1830.

Health care is not always the first priority when you’re just trying to work and survive the day and start all over tomorrow, she cautions. She fears it may not be a priority to some until it’s an emergency.  

“So a lot of it is just cyclical,” she elaborates. “They can’t get great jobs because they live on a reservation and it’s difficult to get off the reservation because of communication barriers and transportation barriers. So, if you’re just stuck, health care is the least of your worries.” 

Looking at the past and current limitations, Ashley buckets ways to improve health outcomes on the reservation into the following: 

• Consistent standard of care across reservations 
• Nutrition and exercise education and access
• Patient counseling on medical treatment 

Consistent standard of care across reservations

Inconsistent health care can make chronic illness management particularly difficult for certain populations, Ashley points out, using her aunt’s diabetes experience as an example. Over the years, her aunt’s diabetes management plan has varied based on the treating physician, making it hard to stabilize her blood sugar.

This challenge is exacerbated by the limited food options on the reservation, which often consist of shelf-stable items high in preservatives and sugars — key contributors to inflammation and diabetes. Interestingly, diabetes was a rare condition among Native peoples until the 1940s. The introduction of these commodity foods led to a surge in obesity and diabetes cases. While more nutritious options have become increasingly available, not everyone has the luxury of choosing fresh produce over canned goods.

However, initiatives like the Food Distribution Program on Indian Reservations (FDPIR) Self-Determination Demonstration Project offer some hope. This program allows tribes to supplement USDA-approved foods with tribally sourced items, expanding food choices for tribal members.

Nutrition and exercise education and access

Access to fresh food and proper nutrition is a critical issue for many Native American reservations, many of which are located in food deserts where healthy, affordable options are limited. Offering in-person visits to these reservations a couple of days a week for free nutrition and exercise classes could be a significant step in improving health outcomes, says Ashley. Given that internet access can be sparse on some reservations, relying solely on online resources may not be effective for everyone. In-person educational sessions would help bridge this gap and could provide tailored guidance on how to maintain a balanced diet and an active lifestyle with the resources available.  

Patient counseling on medical treatment 

 Offering counseling as people are prescribed medications could also help individuals make lifestyle changes in regard to nutrition and exercise. Ashley recalls a family member with diabetes being handed pills to take without any counseling on lifestyle choices. The quality of health care varies greatly across centers, so another patient might receive more guidance and support than another, so there needs to be a standard of care.  

Advocating for Change in Health Care Inequities

Ashley holds the distinction of being the first college graduate on her mom’s side of the family — a significant achievement considering her mother has seven siblings and Ashley herself has numerous cousins.

This educational journey has given Ashley a unique perspective on health care. Although she hasn’t personally experienced the same healthcare challenges that many in her community face, witnessing these struggles has had a profound impact on her. This motivates her to use her voice and position to advocate for better health care for all.

Putting her passion into action, Ashley serves as an ArthritisPower Patient Governor with the Global Healthy Living Foundation. Through this role, she channels her experiences and insights into tangible efforts to improve health care access and quality.

“As someone with certain privileges, I don’t claim to understand everyone’s struggles,” Ashley acknowledges. “But I have immense pride in my family’s resilience, and I recognize that taking on healthcare inequities is a substantial responsibility—one I’m enthusiastic about tackling. Being able to effect positive change, especially in honor of my grandparents, means the world to me.”

Can you relate to Ashley’s story? Do you have ideas on how to address health care inequities within the Native community? We would love to hear from you. Email: sfritz@ghlf.org.

A recent study by the Global Healthy Living Foundation (GHLF) shows that contrary to what insurers and pharmacy benefit managers (PBMs) say, protecting patient assistance programs by restricting accumulator and maximizer programs has not made health insurance more expensive.

Accumulator and maximizer programs can make it much harder for patients to afford their medicines. They prevent financial assistance from counting toward a patient’s deductible and their maximum out-of-pocket payments (set yearly health care cost). The result: patients don’t get all the financial help they need and have to pay more out of pocket. Insurance companies and pharmacy benefit managers use these programs to shift the burden of medication costs onto individual patients — PBMs and insurers pocket such assistance intended for patients as profit.

• Accumulators stop assistance from counting toward a patient’s deductible and out-of-pocket maximums.
• Maximizers set out-of-pocket maximums equal to the maximum value of assistance, usually spread evenly throughout the year. Maximizers also stop assistance from counting toward a patient’s deductible and out-of-pocket maximum.

JP Summers, a rheumatoid arthritis and migraine patient, and Patient Advocate and Community Outreach Manager at GHLF, says “When I finally found a specialty treatment that worked, it was expensive, and I relied on a patient assistance program (PAP) to afford the medication that finally helped me feel better,” she shares. “But after using a PAP-funded card, the funds weren’t applied to my deductible. Instead, my monthly co-pay jumped from $40 to around $350. I had to make hard choices about which medications I could take home.”

PAPs help patients afford costly medications that might be beyond their reach due to their health plan’s design and out-of-pocket payment rules. However, individuals or families might not realize that their plan includes an accumulator or maximizer program. Such schemes can lead to unexpected costs when they find out they still owe money for their prescriptions, even after using the funds provided by the PAPs.

So, patients like Summers might find themselves choosing between necessary medicines and daily needs. “To me, this was basically like a car payment,” she says. “With chronic illness, it’s an ongoing thing — it’s not like getting the flu or breaking an ankle. We had budgeted for the $40 monthly, because that’s what I was used to paying for.”

To further illustrate this, GHLF has developed a free interactive tool demonstrating that state laws banning accumulator and maximizer clauses in health insurance policies have not increased the cost of health insurance.

So far, 19 states have passed laws protecting patient assistance programs (PAPs) by requiring that the financial assistance given to patients count toward the share of health care costs they must pay — co-pays, co-insurance, deductibles, and out-of-pocket maximums.

“Our analysis, which this year includes data from 13 states in 2022 and 19 states in 2023, shows no significant change to premiums, nor is the rate of health insurance premiums rising in states with protective, patient-centered legislation,” says Dr. Robert Popovian, PharmD, MS, Chief Science Policy Officer at the GHLF.

The GHLF tool makes it easy to see health insurance cost changes by state since 2014 and compare it to how health care premium costs have changed in states that have or have not protected patient assistance programs. Such data can provide valuable information for legislators, policymakers, and interested parties who value objective and transparent data to advocate for similar legislation in all states and at the national level.

“It’s not reasonable that patients are paying more than their fair share. We encourage legislators and other advocates who develop state and federal health policy to use our tool to fight for patient-protective laws nationwide,” says Dr. Robert Popovian, PharmD, MS, Chief Science Policy Officer at the GHLF.

And what can people living with chronic illness do? Find out if you’re affected by these programs by asking your employer’s health benefits manager about your coverage options, specifically:

• I’ve heard about programs called accumulator adjusters that might stop my prescription assistance from counting toward my deductible. Are these programs going to be part of our plan next year?
• Do you offer any low-deductible or co-pay only plans that could better match my healthcare needs? If those aren’t available, what support can you provide to help me afford my medicine, given the financial strain accumulators and maximizers could create?

Glossary of Terms

Understanding health care terms can be confusing. Here’s a list of handy definitions to help clear things up and empower you to advocate for your own health care needs.

• Accumulator: a rule in some health insurance plans stating that the money you get from patient assistance programs doesn’t count toward your yearly deductible or your maximum out-of-pocket costs.
• Co-insurance: a part of the cost (or percentage of the total bill) for health care services or prescriptions that a person with health insurance must pay after they’ve met their deductible and until they reach their out-of-pocket maximum.
• Co-pay: a fixed amount of money that someone with health insurance pays each time they get certain health services or prescriptions. Sometimes, co-pays don’t count toward your yearly deductible. Instead, you must keep paying these co-pays until you have reached your out-of-pocket maximum for health care costs.
• Deductible: a set amount of money that an insured person or policy holder pays for their medical care in a year. Once you pay this amount, the insurance company starts to help pay for a portion of your health care. The insurance company will pay for some health care, like preventative care, even before the deductible is met.
• Health insurance premium: This is the money you pay to buy a health insurance policy for you and your family (like your spouse and children). You usually pay this cost every year, broken down into 12 monthly payments.
• Maximizer: a clause in a health insurance policy that sets your out-of-pocket costs equal to the maximum value of a patient assistance program. These costs are typically spread out over a year but don’t count toward your annual deductible and maximum out-of-pocket obligations.
• Out-of-pocket maximum: the most money you have to pay for covered health care services in a plan year. After you spend this amount on deductibles, copayments, and co-insurance, your health plan pays 100 percent of the costs of covered benefits.
• Patient assistance programs: programs that provide financial assistance (discounts or subsidies) to people who cannot afford the cost of the prescription medicine(s) the company produces. These programs are offered by pharmacy organizations, non-profit foundations, state governments, and pharmaceutical companies. When sponsored by a company, the assistance is only for the drugs produced by that company.
• Pharmacy benefit managers (PBMs): companies that negotiate what insurance companies will pay pharmacies and pharmaceutical companies for drugs, including discounts and rebates. PBMs often are also responsible for establishing formularies (list of which drugs insurance will or will not cover) and processing and paying bills for prescription drugs. PBMs also own specialty pharmacies that dispense medicines.
• Policies: the written agreements that detail what amounts or portions of medical or pharmacy costs will be paid by the insured (buyer of the policy) and the insurance (seller of the policy) toward specific medical expenses.

Become a 50-State Network Advocate

Joining the 50-State Network takes just a few minutes, and then you will be plugged into a nation-wide and state-by-state community of other like-minded people who are living with chronic conditions (or love someone who is). Together, we share our strength, experience, wants and needs as a patient community so that we can raise our voices with our healthcare decision-makers. Sign up today.

Editor’s note: LGBT stands for lesbian, gay, bisexual, and transgender. Throughout this article, you’ll also see common variants of this acronym referenced in research and expert interviews, including LGBTQ (which includes queer or questioning persons) and LGBTQIA (which includes intersex and asexual persons). As an editorial team, we use the full acronym and the plus sign when referring to the LGBTQIA+ community, which symbolizes the large diversity of other identities that can’t yet be fully described with letters and words. 

In every field of medicine, including arthritis, it’s increasingly clear how important it is to recognize disparities in the care of LGBTQIA+ patients.  

In 2022, 7.1 percent of Americans identified as lesbian, gay, bisexual, transgender, or something other than heterosexual — double the percentage from 2012, per Gallup data. What’s more, about 21 percent of Gen Z Americans who have reached adulthood (those born between 1997 and 2003) identify as LGBT, nearly double the proportion of millennials who do. The gap is even more striking when compared to older generations.  

However, these patients don’t always receive the same level of care as others, even though they have unique needs — including when it comes to pain management.   

The Challenges LGBTQIA+ Individuals Face

The LGBTQ+ population experiences unique needs regarding chronic pain management compared to the general population, note the authors of a November 2021 review in the Journal of Pain Research.  

Here are three key facts from that review to consider: 

• Sexual minority adults experience functional limitations more frequently due to pain and are more likely to experience pain from multiple sites compared to heterosexual adults (for instance, back pain, shoulder/neck pain, migraine, and arthritis are more common in this population)
• There’s a well-established link between depression and pain. These conditions are strongly linked to each other and lead to worse outcomes when patients suffer from both — and sexual minority adults experience higher levels of depressive symptoms and disorders than heterosexual adults.
• A larger portion of LGBTQ+ individuals lack access to health insurance and live in poverty than is the case in the general population. LGBTQ+ individuals are more likely to delay medical care or forgo it entirely. Reasons for avoiding health care include discrimination from health care providers and even denial of care.

When it comes to arthritis specifically, the prevalence is 5.6 percentage points higher among gay/lesbian adults than among straight adults (26.7 percent vs 21.1 percent), per a 2015 study published in the journal Preventing Chronic Disease.  

What’s more, over 30 percent of transgender individuals reported at least one negative experience related to being transgender, like being refused treatment, being harassed or assaulted, or receiving incompetent care, per The Report of the 2015 U.S. Transgender Survey. 

This can be compounded if you’re part of a sexual minority group and also a person of color.  

“When we look at the LGBTQIA+ community, they have multiple challenges — not only with race and ethnicity, but also of course sexual orientation,” says Sheila Thorne, President and CEO of Multicultural Healthcare Marketing Group. “For instance, Black, Latino, Asian, and Native American LGBTQIA+ people have a very different experience than those who are white LGBTQIA+.” 

What Health Care Providers Can Do

Before these barriers to care can be eliminated, it’s key for providers to acknowledge the unique challenges and health problems of the LGBTQIA+ community. This will enable them to better treat chronic pain and improve the quality of life for these patients.  

“Provider education and dedication to improving cultural competency are measures that the medical community can take to help this population gain confidence in utilizing health care,” note the authors of the Journal of Pain Research review. “Additionally, improving access to health insurance remains a necessary step.”  

There are several steps that can be taken to ensure this from the health care provider perspective, says Amber Dixon, the CEO of Elderly Guides, an organization that provides resources for coping with age-related issues. Those steps include:  

• Improving cultural competency. Health care professionals should receive ongoing training to understand the unique experiences and health needs of LGBTQIA+ individuals, including those with arthritis and chronic pain.
• Creating inclusive environments. Health care facilities should adopt inclusive policies, anti-discrimination guidelines, and use gender-neutral language to ensure a welcoming and safe environment for LGBTQIA+ patients.
• Addressing mental health. Providers need to understand the increased risk of mental health issues in the LGBTQIA+ community and provide appropriate support and referrals as needed, especially when dealing with chronic conditions like arthritis.
• Foster collaboration. Health care providers should collaborate with LGBTQIA+ advocacy organizations to better understand the needs of the community, share resources, and promote access to care. 

“You really have to surround the community and saturate it with a message,” says Thorne. “The resources are there — including governmental resources and using social media carefully. These are the best ways to reach populations with messages that will educate, empower, motivate, and activate people to take charge and take control of their health.”  

How You Can Advocate for Yourself

Although many responsibilities fall into the hands of health care providers and the larger health care system, there are also ways you can advocate for yourself in the doctor’s office if you are an LGBTQIA+ individual. 

The first step is connecting with a caring doctor — and making corrections and asking questions as needed, per Cedars-Sinai. This may involve telling your doctor if you are being misgendered or dead-named (when a transgender person is called by their birth name even after they have changed their name as part of their gender transition).  

You should also speak up if you’re not being offered preventive health screenings appropriate for your sex designated at birth or for your risk factors based on your sexual practices.  

Ask questions about why your provider enquires about particular practices, habits, or bodily functions if you don’t understand the reasoning. That clarification can improve your relationship with your doctor and help you determine if you’re getting caring, adequate care — and enable you to understand your symptoms and treatment options better.  

If your physician doesn’t provide judgment-free care or isn’t culturally competent, look for a new provider. You may ask community members of friends for referrals to LGBTQIA+-friendly providers or search online using keywords like “inclusive,” “LGBTQIA+-friendly,” and “gender-affirming care.”  

The LGBTQ+ Healthcare Directory, which was created by the Gay and Lesbian Medical Association in partnership with Cigna and the Tegan and Sara Foundation, is a free and searchable database of health care professionals who are knowledgeable and sensitive to the unique health needs of LGBTQ+ people in the United States and Canada. You can use the platform to search specific types of providers in your area. 

Meanwhile, the National LGBT Health Education Center offers resources for both health care providers and patients on improving access to care for LGBTQI+ individuals, including webinars on topics like Long COVID and LGBTQIA+ Mental Health and Primary Care for Transgender and Gender Diverse Patients. 

Health care disparities in the LGBTQIA+ community won’t be cured overnight, but bit by bit, many organizations and health care providers are working toward providing better care for this population.  

“This is a journey — it’s not a 90-day wonder,” says Thorne. “You really have to be committed to making sure that your efforts are sustainable, measurable, and replicable. It has to be focused on where the population is, what the resources are to access care, and hopefully galvanize the community around health issues that will enable them to live a quality life, especially if there’s no cure for their condition.”  

Asthma Podcast: LGBTQ+ Patients

In this edition of The Asthma Podcast, we dive into the stories of LGBTQ+ asthma patients within the theme of “Love Should Take Your Breath Away, Not Asthma,” exploring how LGBTQ+ individuals navigate their identities, relationships, and asthma all at the same time. Listen now.

As you’re likely far too familiar, insurance often gets complicated quickly. However, the specific fine print in your insurance around programs called accumulators and maximizers may mean the difference between being able to afford your medication or not.

A copay accumulator adjuster program is a type of health insurance program that affects people using biopharmaceutical patient assistance programs, which are usually provided by a drug manufacturer to help reduce the cost of taking the medication. Accumulator programs don’t allow patient assistance through the pharmaceutical industry to count toward the deductible set by the insurance company.

For example, let’s say your patient assistance card has a $6,000 limit and your deductible is $6,000. After that $6,000 is covered by the patient assistance program, you still have to pay $6,000 out-of-pocket since none of it was counted toward the deductible with an accumulator adjuster program, per the Global Healthy Living Foundation (GHLF).

“It started about five years ago when the pharmacy benefit management companies started introducing the accumulator program marketplace, so they convinced a lot of employers to pick it up as part of their benefit design,” says Robert Popovian, PharmD,.Chief Science Policy Officer at GHLF. “But it’s not just about the accumulators. The next iteration has been the maximizer program, which is a little different, but the same principle applies — that any type of patient assistance that comes from the pharmaceutical industry would not count toward a patient’s deductible or maximum out-of-pocket cost.”

Maximizer programs set patients’ out-of-pocket maximums equal to the maximum value of a manufacturer’s patient-assistant program, which is usually spread evenly throughout the benefit year. Maximizer programs also don’t allow manufacturer support payments to count toward your annual deductible and out-of-pocket obligations.

Last year, 89 percent of commercially insured beneficiaries were enrolled in plans with accumulators available in the plan design and 76 percent were enrolled in plans with maximizers in the plan design, per Drug Channel. That’s a significant jump from 2018, when those figures were 44 percent and 14 percent, respectively.

These programs impact patients taking specialty drugs the most since those products have the highest out-of-pocket costs and most well-funded out-of-pocket support programs. For instance, in 2022, 14 percent of autoimmune patients taking brand-name drugs had an accumulator or maximizer adjustment applied to their benefit. Other commonly affected specialty therapeutic areas are multiple sclerosis and oncology.

It’s important to ask your employer or the insurance company if these plans are in place before you enroll — and if they are, ask for help in finding a different plan.

A Real Patient’s Story

Patient Advocate and Community Outreach Manager at GHLF JP Summers lives with several chronic illnesses, including  chronic migraine. For her, a migraine attack isn’t just excruciating pain. It’s nausea, hampered motor skills, and sensitivity to lights, sounds, and odors.

Summers found a medication that provided relief but quickly became more expensive due to an accumulator program embedded into the fine print of her insurance contract. Since her patient assistance funds for the migraine medication weren’t applied to her deductible, the monthly out-of-pocket jumped from $40 to around $350.

“To me, this was basically like a car payment,” says Summers. “With chronic illness, it’s an ongoing thing — it’s not like getting the flu or breaking an ankle. We had budgeted for the $40 monthly, because that’s what I was used to paying for.”

Summers’ son was also diagnosed with migraine and needed expensive medications, so she had to stop taking her medication for a while to pay for her son’s. Like her, Summers’ son was affected by an accumulator program.

“I was just so upset and so angry that this was happening,” says Summers. “I, of course, have no problem making the decision in a heartbeat to put my child’s health over mine. But you should never be put in a situation where you must choose between your treatment and a loved one’s treatment.”

What the Government Is Doing

States have tried to ban accumulators and maximizers. Insurance companies and pharmacy benefit management programs claim that restricting accumulator and maximizer programs will cause higher health insurance premiums across the state. However, a free, interactive tool launched by GHLF shows that this isn’t true.

“We created this tool to show that there are zero correlations between passing this legislation and impact on premiums, whether it’s negative or positive,” says Popovian.

So far, 16 states have passed laws mandating that all payments made by patients count toward the out-of-pocket maximum or deductible — whether biopharmaceutical company patient assistance programs fund them or not.

Meanwhile, manufacturers are also pushing back on these programs, per Drug Channels. Their strategies include:

• Offering direct-to-patient rebates for out-of-pocket spending
• Using debit cards instead of typical patient assistance programs
• Implementing per-claim caps
• Lowering support benefit amounts
• Limiting support access for plans using accumulators and maximizers

Some manufacturers may also choose not to disclose patient assistance program limits to make it more difficult for pharmacy benefit management programs to implement accumulator and maximizer programs. At the same time, some have changed their Terms and Conditions to exclude members with a maximizers from their out-of-pocket assistance programs.

What You Can Do

First, find out if you’re affected by these programs by asking your employer’s health benefits manager or HR representative these four questions:

1. What are my coverage options?
2. I’ve heard that there are new programs that employers are adopting, particularly as part of high-deductible health plans, that do not allow for my prescription out-of-pocket assistance to be applied to my deductible as it was in the past. This program is called an accumulator adjuster. Are you adopting these programs for the upcoming year?
3. Is there a low-deductible or copay only plan available that may be a better fit for me and my health care needs?
4. If there are no low deductible or copay-only options, how will you help me afford my medicine, given the financial hardship that accumulator adjusters may cause me?

If you’re affected by one of these programs:

1. Contact us for help explaining to your employer the negative effects copay accumulator adjuster programs have on their employees.
2. Find out other alternatives to pay for your out-of-pocket.
3. Sign up for the 50-State Network to raise your voice against these programs.
4. Learn more about the role of insurance commissioners and learn how to file a complaint.

“You have to speak up for yourself and make it known that it’s not okay that this is happening,” says Summers. “Raising awareness for what’s happening is so important. The more people who come out to share their stories, the more progress we’re hoping to make.”

This is a key opportunity to advocate for state and federal legislation, which could help protect you and others with chronic illness from unaffordable medication costs. “If you’re a patient who has health insurance through a large multinational corporation, which are mostly self-insured, you’re not being protected by state law,” says Popovian. “They have to pass federal legislation to be able to regulate those plans — so for us to be really able to impact and protect all patients, we need both state and federal legislation.”

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspectives and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here. 

This year is poised to be a big year for biosimilars, mainly because the period of exclusivity for Humira (adalimumab) has come to an end. The loss of exclusivity opens the door for adalimumab biosimilars to hit the market. The first one, Amjevita (adalimumab-atto), is already here as of January 31, and at least seven others are expected to follow soon.  

The growth of biosimilars is good news for patients because it means more options will be available when you need to fill a prescription or go to a clinic for an infusion. It should also mean that you’ll save money, but that won’t necessarily be the case. A new report from the Patient Access & Affordability Project explains why.  

The report was based on a roundtable discussion of health care experts, including Robert Popovian, PharmD, Chief Science Policy Officer at the Global Healthy Living Foundation. It is designed to highlight current trends, explain the benefits of biosimilars, and alert patients to the fact that they will likely miss out on the financial perks associated with biosimilars, at least in the short-term. 

What Are Biosimilars?

Biosimilars are essentially generic versions of biologic medications. Technically, they’re not the same as generic drugs because it’s impossible to reproduce a biologic drug exactly. Biologics — and the biosimilars that are meant to mimic them — are made from a complex process and entail the use of living cells. According to the Food and Drug Administration (FDA), biosimilars are “highly similar [to the original biologic they’re designed to copy] and have no clinically meaningful differences from an existing FDA-approved reference product.”  

FDA-approved biosimilars “have been studied for a long time, work the same for your condition, and the safety and quality are the same,” says Sameer Awsare, MD, Associate Executive Director of the Permanete Medical Group, who participated in the Patient Access & Affordability Project roundtable. That means if you were used to taking, for instance, Remicade (infliximab) and you switch to a biosimilar of it such as Inflectra (infliximab-dyyb), you shouldn’t notice any difference in terms of how well it works for you. Dosing and potential side effects should also be identical. 

Biosimilars aren’t easy to make, but their development cost is significantly less than developing a novel brand biologic from scratch, says Dr. Popovian. Moreover, their presence means that there will be competition in the marketplace, compelling drug manufacturers to lower prices to make their products more attractive to health insurance companies and other payers (like Medicare).

The use of biosimilars has already translated to savings of about $13 billion across the health care system, and that number could jump to $130 billion by 2025, according to the Biosimilars Council. The catch is that these savings often do not make it to patients. 

Why Aren’t Patients Switching to a Biosimilar Saving Money?

The problem, Dr. Popovian explains, stems from the fact that a patient’s coinsurance or deductible for biologics self-administered at home (such as Humira or a biosimilar like Amjevita) is based on inflated retail prices. Pharmacy Benefit Management (PBM) and insurance companies negotiate deep discounts based on rebates with the biopharmaceutical manufacturers; unfortunately, those savings are not shared with the patients and are primarily hoarded as profit by PBMs and insurers.  

Here’s how it works: Let’s say you fill a prescription for Humira, and the retail price is $500*. If you’re among the growing number of people with coinsurance (rather than a flat fee copay), you’ll pay a set percentage of that retail price after hitting your deductible for the year. If your coinsurance is 20 percent (and you’ve already hit your deductible), you’ll pay $100 when you get your prescription. But at the same time, your insurer might also be getting a rebate from the drug manufacturer — let’s call it $250. So your total cost of $100 was based on the inflated retail price, not the price that the PBM or insurer negotiated on your behalf.  

The presence of biosimilars and the way the pharmacy benefit design is set up allows PBMs and insurers to leverage market competition and negotiate steeper rebates that are never passed back to the patient at the point of sale.  

PBMs may sometimes pass back some of the savings to the insurer. Still, due to consolidation in the past years, the insurers and PBMs are the same; the savings or profiteering stays within the insuer/PBM conglomeration. 

Ultimately, “It’s more lucrative for PBMs to maintain the formulary presence of a more expensive drug that they can negotiate higher rebates for,” says Dr. Popovian.  

What You Can Do

Step one: Educate yourself about biosimilars. Listen to GHLF’s Breaking Down Biosimilars and Health Care Matters podcasts, download our Patient’s Guide to Understanding Biosimilars, and read the Patient Access & Affordability Project report.  

Similarly, educate yourself about your pharmacy benefits. You may or may not have a choice between a biologic and a biosimilar, and even if you do, you shouldn’t assume without checking that your cost for the biosimilar will be less — though it might be.

Patients who are part of Kaiser Permanente, which is a non-profit integrated health system that includes pharmacy benefits, will certainly see the savings right away by switching from a biologic to a biosimilar, says Dr. Awsare. “We don’t believe in rebates; we just lower the price,” he says, noting that when patients can’t afford medication it only drives up other costs, such as those related to hospitalizations. “There’s no benefit to us to keeping patients sick.”  

Suppose your doctor or changes in your health plan nudge you toward using a biosimilar. In that case, that’s OK because these copycats are just as safe and effective as the biologics they originated from. But you should also see your out-of-pocket costs come down as a result. If that’s not happening — or, even worse, if your health care costs are going up — sharing your story may help patient advocates continue to push for legislative reform. Write us at HealthcareMatters@ghlf.org to let us know your experience. 

*These numbers are just for illustrative purposes. The amount your insurance pays for a drug, the percent of your coinsurance, and the rebates negotiated for a particular product will all vary by insurance plan.  

 

If you enjoyed reading this article, you’ll love what our video has to offer.

Visit eRheum.org for personalized tips for a better telehealth rheumatology visit.

Before the COVID-19 pandemic, I used to wish that some of my doctor appointments could just be a phone call instead of the hours of hassle of traveling back and forth for an appointment that took no more than 10 minutes.

During the pandemic I’ve had a few health scares that required both me and my son to seek medical attention in a frightening enough time. I had plenty of visits with doctors over the phone and Zoom, as well as in-person visits when virtual ones did not give us the answers we needed.

As unfortunate as the pandemic has been on countless levels, I am glad that this type of health care has become available, especially to chronic illness patients like me. But like most things, telehealth (or telemedicine or virtual health) has its share of pros and cons.

Here’s what I’ve observed over the past few months, as someone with rheumatoid arthritis and other conditions who’s been using a mix of telehealth and in-person visits.

The Pros of Telemedicine Visits When You Have Chronic Illness

Telehealth visits are better for fatigue

Living with a chronic illness is a full-time job. I’m constantly juggling medical appointments, treatments, and self-care.

Virtual health is tremendous for those living with chronic fatigue. Traveling from point A to point B can be exhausting, as can just getting ready to leave the house. On a bad fatigue day, something as simple as taking a shower can make my body crave a nap. Commuting to a doctor visit can leave those of us with chronic fatigue too spent to really communicate how we want to during the appointment. Fatigue often comes with brain fog, which can make it difficult to remember what the doctor says.

But when I see a doctor virtually now, I find myself with more energy to spare before and after appointments that would normally tire me out for the entire day.

Telehealth visits are perfect for bad days

One of the biggest challenges I felt when first diagnosed with rheumatoid arthritis — and didn’t have the right treatment plan yet — was just making it to all of my appointments because of how sick I was at the time. Some days I was sleeping up to 18 hours a day. Getting to appointments on my own was too difficult. If only I had the option to just call in for some of those appointments when I was at my sickest. It would have been so much better to handle things like a simple prescription renewal over the phone instead of dragging myself to the doctor when I could barely even sit upright in bed.

With a chronic illness like rheumatoid arthritis, which flares and ebbs, chances are that I will get very sick again. I hope telehealth will be an option for me when that happens.

Telehealth visits help keep immunocompromised patients safe

Long before COVID-19 made everyone more conscientious of germs, people with compromised immune systems — like those of us with inflammatory arthritis — worried about our exposure to potential germs in doctor office waiting rooms or during our commutes.

During the pandemic, telehealth visits have allowed us to keep getting care while minimizing our exposure not just to COVID-19, but infections generally. This is also great if we’re under the weather ourselves. We don’t need to cancel an appointment or worry about infecting others if we have some sniffles or a sore throat.

My rheumatologist was even able to treat me virtually (over the phone) while she herself was infected with and recovering from COVID-19. I stayed safe and got the continuity of care I need.

Telehealth visits save us money

Doctor’s visits can have a lot of sneaky costs we don’t always think about, but they add up. With telehealth, I don’t have to pay for a babysitter for son or for public transportation. Many patients don’t live anywhere near their specialists — they have to take days off work or even stay in a hotel to just see a doctor for 15 minutes.

Telehealth therapy makes me feel more relaxed

Out of all my virtual visits, I enjoy talk therapy over the phone with my clinical social worker the most. I found myself able to be more relaxed at home. I had less anxiety. I could even stay in my PJs if I wanted.

Telehealth can connect those who speak the same language

Language barriers can be a huge problem when it comes to seeking medical help for someone who may not speak the country’s native tongue. While this isn’t an issue for me personally, I hear about it in the patient advocacy community. It may be easier to find providers over telehealth who speak the same native language than in person in your local community.

Telehealth transforms access for those in rural communities

I think the main reason I love the option of virtual and telehealth services is because there are so many people in rural communities who don’t have access to right providers — or they can’t get to the doctor as often as is ideal. Many people with chronic illnesses like inflammatory arthritis need to see a rheumatologist or other specialists every few weeks or months.

The Cons of Telemedicine Visits When You Have Chronic Illness

Telehealth doesn’t work as well when you need a physical exam

If you live with a progressive illness like I do, virtual health isn’t a great fit when you need a physical exam. Because of the pandemic, I haven’t been able to see my rheumatologist or physiotherapist for a joint exam when I really needed it. I know doctors and researchers are studying how joint exams can be conducted better virtually (by coaching patients on how to do them), but there’s something comforting about a professional assessing my symptoms in person.

Telehealth isn’t good for getting out of the house

Many of us with chronic illnesses spend a lot of time at home — during the pandemic, yes, but even before that. Sometimes just getting out of the house can make me feel a bit better when I’m dealing with the whirlwind of symptoms that my rheumatoid arthritis causes. A bit of fresh air, movement, and face-to-face contact with others can bring some surprising health benefits. They can energize my day a little and boost my mood.

While on the whole, virtual care is better when you have a lot of fatigue or disease activity, there is something to be said for having a reason to leave your house for a bit. More time at home means more joint stiffness and less motivation. It’s a tough balancing act.

Telehealth doesn’t replace face-to-face connection

Face-to-face on video just isn’t the same as literally being in the same room with your provider. When you have a chronic illness, you can develop deep connections with your doctors. I’ve been seeing some of mine since the early days of my diagnosis. I’ve even worked closely with some on research studies over the past few years.

Having months of mostly virtual visits has made me realize how much I actually miss seeing them and how much subtle socializing came out of just going to my appointments. Seeing them from my home is, well, kinda lonely.

Telehealth is not the best for an emergency

This one may seem obvious, but I don’t merely mean the kind of emergency for which you should call 911 or head right to the hospital.

When you have multiple chronic illnesses, having new or bizarre symptoms you’ve never experienced before can be an emergency.

During the beginning of the pandemic, when my area was in a lockdown, I started to experience some bizarre intense symptoms of numbness and popping sensations in my legs. My hands felt and feet felt like they were on fire.

I started out with virtual visits, but they didn’t do much except freak me out even more and prolong my diagnosis.

When I told my rheumatologist and general practitioner about these symptoms, I could hear their frustration that they couldn’t do a physical exam to rule out some serious illnesses that my symptoms were mimicking. Both advised me to go to the emergency room to see a neurologist the soonest I could. After two physicals, an electromyography (EMG) — a test to assess muscle and nerve health, and a lot of bloodwork, we discovered that I live with a rare copper deficiency that was causing my strange symptoms.

Telehealth: Not Perfect, But Game Changing

Despite not being perfect, telehealth is game changing for people with chronic illnesses (or even just a busy lifestyle). I hope that the changes in access to telehealth that arrived during pandemic stick around long after it and continue to evolve to improve our care.

Want Better Virtual Care with Your Rheumatologist?

For personalized advice on getting the most out of your rheumatology telehealth visits, check out our new site eRheum.org.

Tracking your RA pain can help you better understand your condition and talk about it with your doctor. Join ArthritisPower, a patient-centered research registry, to learn more about your RA. Sign up here. 

When you’re in pain, the last thing you may want to do is talk about it. Yet communicating your rheumatoid arthritis (RA) pain clearly and honestly to your rheumatologist — including where on your body you experience pain, how it feels, what brings it on, how long it lasts, what it prevents you from doing, and what, if anything, makes it feel better — can make sure you get the care you need to manage (and minimize) your rheumatoid arthritis pain.

We asked top rheumatologists what they want to know when it comes to helping patients manage their RA pain. Keep this handy checklist nearby during your next telehealth visit, or bring it with you to your next in-person visit.

1) Where is your pain?

The first thing your rheumatologist wants to know is the exact location of your pain. Is it on one or both sides of your body? Is it widespread beyond just the joints?  Don’t worry if you don’t know the exact name of the joints — just point to them and trace the path if the pain travels to other parts of your body.

2) What is your personal pain scale?

Your rheumatologist will likely ask you to describe your pain intensity on a scale of 0 to 10. But because may people with chronic pain have different perceptions of pain than people without pain, it’s important to put this in the context of your personal threshold for pain. For example, can you more or less function normally during a 3? Does a 6 make your reach for extra medication?

Your own pain scale can be very telling, especially as it’s tracked over time. “If you’ve been on effective rheumatoid arthritis medication and your pain scores continue to be high — 8, 9, or 10, it can mean something else is driving your pain,” says rheumatologist Alvin F. Wells, MD, PhD, director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin.

3) Is pain interfering with your daily living?

You’ll need to communicate the functional impact pain is having on your day-to-day life or your daily activities of living. “Sometimes function will tell me a lot more because you’ll see changes in function even if the patient isn’t describing pain,” says rheumatologist Grace C. Wright, MD, PhD, founder and president of the Association of Women in Rheumatology (AWIR).

For example, think about whether you’re able to do the following:

• Get out of bed
• Dress (close buttons, pull zippers, and tie your shoes)
• Bathe (wash and dry your hair and body)
• Go to work (get in and out of your car, bus, or train)
• Engage in social activities
• Exercise (walk two miles or participate in sports)
• Shop and prepare meals
• Do dishes (turn faucets on and off, bend down and reach to load and unload the dishwasher)
• Do laundry (bend down to pick clothes off the floor)
• Climb stairs
• Sleep

4) How does the pain feel to you?

There is no one right word to perfectly describe your pain, but using language to convey your physical sensations can help your doctor identify the cause of your pain. For inflammatory pain (like that from RA), commonly used words include:

• Throbbing
• Aching
• Sharp
• Shooting
• Hot
• Burning
• Grinding
• Grating
• Dull

Or you might opt for a more detailed description. Leah Alon (Nichols), MD, a rheumatologist in New York City recalls a patient telling her: “It feels like my hand is stuck in a metal glove in the morning.”

We asked CreakyJoints and Global Healthy Living Foundation members to share how they describe their pain. If any of these descriptors resonate for you, share them with your rheumatologist.

• “Waking up feeling like my joints are going to shatter each time I move.”— Julie W.
• “Like my knees are filled with molten metal, my back has been beaten with a stick, and I’ve turned into the tin man.” — Kary B.
• “Like someone heated barbed wire till glowing red and wrapped it around my hands and feet tightly.” —Linda K.
• “Like a toothache in my joints.” — Cathy H.
• “Like someone repeatedly hitting my fingers with a hammer.” — Wes L.

5) What makes your pain worse or better?

This information can be very telling for your rheumatologist, as it can help them figure out whether your joint pain stems from RA — or from something else, like osteoarthritis, fibromyalgia, tendinitis, or bursitis.

• Is pain worse in the morning?
• Does pain feel better with rest?
• Is pain better after a hot shower?
• Is pain worse after sitting for a long time?
• Does pain occur after using the joint?
• Is pain constant or does it ease for periods?
• Is the area painful to the touch?
• Does pain occur during specific activities, like standing from a seated position or using stairs?
• Does pain increase with certain weather?

6) How are your medications working for you?

With so many RA treatment options available, there’s no reason to settle for something subpar. Don’t hesitate to let your doctor know if you suspect your treatment plan is not working or may have stopped working.

They can consider bumping up, changing, or adding to your treatment.

While you shouldn’t stop or adjust your medication dose on your own, if you have changed your medication regimen, you need to let your provider know.

Skipping doses of a disease-modifying drug, for example, could lead to painful RA flares.

7) How are you feeling emotionally?

If physical pain is taking a toll on your mental health — you feel anxious, nervous, sad, depressed, or can’t sleep — your rheumatologist needs to know. With this information, they can determine what additional treatments might be beneficial for you, including therapy or counseling, or taking medication to help ease depression or anxiety. They can also recommend online and online and local support groups of fellow patients with RA.

Keep Reading

• Rheumatoid Arthritis Pain and Flare-Ups: What to Know and Do
• 6 Causes of Rheumatoid Arthritis Pain Aside from Inflammation
• How to Discuss Your Rheumatoid Arthritis Pain During a Telehealth Visit
• Rheumatoid Arthritis Pain: When to Consider a Medication Change

Track Your RA Pain with ArthritisPower

ArthritisPower is a patient-centered research registry for joint, bone, and inflammatory skin conditions like rheumatoid arthritis. You can select different health assessments that matter to you, and choose how often you want to take them. When you have an upcoming doctor appointment, you can discuss your latest assessments and feel more informed. Learn more and sign up here.

This article is part of A Patient’s Guide to Understanding Rheumatoid Arthritis Pain and was made possible by a grant from Sanofi Genzyme. 

Tracking your RA pain can help you better understand your condition and talk about it with your doctor. Join ArthritisPower, a patient-centered research registry, to learn more about your RA. Sign up here. 

If you have rheumatoid arthritis and are experiencing flares or unexpected pain, figuring out what’s going on is not always easy.

Is your RA getting worse? Do you need a medication change? Is there another condition causing the pain? These issues can be even more difficult to manage right now, when you may be seeing your provider via a telehealth visit rather than in person because of the COVID-19 pandemic.

During a telehealth visit, your rheumatologist will examine you by using a video/audio service like FaceTime or Skype, or a specific telehealth app intended for this purpose.

While telehealth existed before the COVID-19 pandemic, it was not generally used in a mainstream way. Issues like privacy regulations and insurance reimbursement made it challenging for providers to widely adopt telehealth. Rheumatologists have also been hesitant because of the inability to do a physical exam, which includes touching the joints and assessing their range of motion.

However, necessity is the mother of invention. COVID-19 necessitated that rheumatologists start using telehealth for many different kinds of issues, from routine visits to acute concerns like RA pain. After a few months, rheumatologists are finding that a little creativity on their part and a lot of communication from patients can help overcome this limitation.

“Treating rheumatoid arthritis pain is really about guiding people to tease through the factors that are weaving into the thing they call pain,” says rheumatologist Grace C. Wright, MD, PhD, founder and president of the Association of Women in Rheumatology (AWIR). “I need to pick apart what’s behind the symptom,” she says, noting that there are differences when doing this in person compared with telehealth.

How Doctors Assess Rheumatoid Arthritis Pain During a Telehealth Visit

You may be surprised by what rheumatologists can assess from afar, especially if you have video with good resolution, says Leah Alon (Nichols), MD, a rheumatologist in New York City.

While your rheumatologist won’t be able to physically touch you, they can:

• Have you bring your joints to the camera (or angle the camera differently) to inspect for swelling
• Guide you to press (self-palpate) the joints to check for tenderness (pain)
• Assess mobility by asking you to make a fist or mimic like you’re writing, or just by observing how quickly you can reposition the phone during the visit.

They can also use the following RA disease activity measures to assess swollen/tender joint count, your level of difficulty performing everyday tasks and participating in social activities, your mental state (depression and/or anxiety), ability to sleep well, and pain level.

• Clinical Disease Activity Index (CDAI)
• Disease Activity Scale-28 (DAS28-ESR/CRP)
• Patient Activity Scale II (PAS-II)
• Routine Assessment of Patient Index Data 3 (RAPID3)
• Simple Disease Activity Index (SDAI)

Your provider likely has a preferred questionnaire and may ask you to fill this out before the telehealth visit, or you may fill it out together during the visit.

Similar to an in-person appointment, your rheumatologist will work with you to figure out what is causing your pain, says Dr. Wright. A new pain issue could be:

• Inflammatory (such as whether you’re having an RA flare)
• Mechanical (due to low back pain, carpal tunnel syndrome, muscles strains or sprains, tendonitis, or bursitis)
• From something else, such as fibromyalgia, depression, or lack of physical activity

Read more about causes of RA pain aside from inflammation.

“With rheumatoid arthritis, it’s the small joints in the hand, wrists, and feet, but it can also be larger joints like the knees, hips, and ankles if you’ve had long-term disease,” says rheumatologist Alvin F. Wells, MD, PhD, director of the Rheumatology and Immunotherapy Center in Franklin, Wisconsin. “Once I identity the peripheral joints, then we’ll talk about pain.”

To test for pain remotely, your rheumatologist may ask you to mimic some of the motions they would have performed on you during the in-person exam, notes Dr. Wells. For example: Imagine holding your hand up and flexing your wrist back like you’re going to touch the back of your arm with your fingers: Does it hurt? Or, make a motion like you’re going to lift up a pot of coffee: How does that feel?

“If a patient can’t make a fist or if they demonstrate that their grip strength is weak — can you hold a bag of groceries? — that’s a sign of active inflammation,” says Dr. Wells.

What to Tell Your Doctor During a Telehealth Visit About Your Pain

“Communication is particularly important in telemedicine because we can’t physically press on the joints,” says Angus Worthing, MD, a clinical assistant professor of medicine at Georgetown University Medical Center in Washington, D.C.

What does your rheumatologist want to know? Here are a few questions they may ask about your pain during a telehealth visit:

• Where is your pain?
• When did your pain start?
• What does your pain feel like?
• How would you rate your pain on a scale from 0 to 10?
• When do you have the most pain: in the morning, during the day, at night?
• Is there stiffness involved?
• Do you have any noticeably swollen or red joints?
• Which activities make your pain worse?
• Which activities does the pain preventing you from doing? (Can you open door knobs or open jars? Are you able to sleep?)
• How is your pain compared to your last visit?
• How do you feel in general? Are you more tired, stressed, or depressed?
• How are you feeling on your medication?

In addition, Dr. Wright says she’ll want to know your current activity level — and how quarantining may be affecting your pain:

• Are you leaving your home for anything?
• How much activity are you doing now compared to the beginning of the year?
• What are you doing to substitute for your usual exercise programs and physical therapy?

“Patients who quarantine strictly — everything is delivered, they don’t leave, there is no built-in exercise — are reporting more pain with the same amount of joint swelling and tenderness,” she says. “This can be a component of deconditioning and the mental fatigue of being isolated from quarantine.”

This is not the same pain that occurs when your joints flare due to inflammation, she notes.

Use this checklist to help you talk about your pain during your next telehealth visit.

When to Contact the Doctor — and When You Need an In-Person Visit

The bottom line is that you need to alert your doctor if you’re having pain. A telehealth video chat is a good first step.

“The virtual visit is the trigger,” says Dr. Wells. It helps the rheumatologist determine whether you may need an imaging or lab tests, or may need to change your medication dose or consider different medication options.

Dr. Wells says you should especially make a call (and, possibly, arrange an in-person visit or trip to the emergency department) if you experience any of these red flags:

• Your pain wakes you up at night
• Your pain prevents you from walking or moving
• You can’t put weight on your joints

In addition, you’ll need to come into the office if you have one swollen big joint (like a knee) all of sudden. “We’ll need to do a procedure and aspirate the joint to rule out infection,” says Dr. Alon.

Treatment Changes to Manage Your RA Pain

Whether or not your rheumatologist wants to change or adjust your medication after a telehealth visit may depend on the cause of your pain and the type of medications you take, as well as the individual physician’s and patient’s preferences.

If your pain is suspected to be due to inactivity, treatment may be as simple as moving more throughout the day. “For patients who are stuck in an apartment building [because of the coronavirus], or can’t leave because they are disabled, I have them put on a mask and gloves and walk the hallways,” say Dr. Wright.

She also recommends trying virtual physical therapy or online exercise classes and videos that you can modify to your capacity.

If you have multiple joints that are swollen because you’re having an RA flare, your rheumatologist may discuss switching you to, say, a different DMARD, increase your dose, or add another medication, says Dr. Alon. “If you have a mild flare, we might just do a steroid like prednisone.”

But if your pain is suspected to be due to a condition such as fibromyalgia or osteoarthritis, the treatment will be completely different.

“The biggest issue is to determine whether there are any other causes of pain,” says Dr. Wells.

The bottom line: The most important thing to remember about managing RA pain in a telehealth world is that it is manageable. Even if you’re unable to visit your rheumatologist for a touch-to-touch exam, you can work with them to identify and treat the underlying cause of your pain.

“It’s a really good option right now, especially for longtime patients,” says Dr. Alon. “You know them, they know you, they know their bodies and they’re at home, safe, and comfortable.”

Keep Reading

• Rheumatoid Arthritis Pain and Flare-Ups: What to Know and Do
• 6 Causes of Rheumatoid Arthritis Pain Aside from Inflammation
• Rheumatoid Arthritis Pain: 7 Things You Should Tell Your Rheumatologist
• Rheumatoid Arthritis Pain: When to Consider a Medication Change

Track Your RA Pain with ArthritisPower

ArthritisPower is a patient-centered research registry for joint, bone, and inflammatory skin conditions like rheumatoid arthritis. You can select different health assessments that matter to you, and choose how often you want to take them. When you have an upcoming doctor appointment, you can discuss your latest assessments and feel more informed. Learn more and sign up here.

This article is part of A Patient’s Guide to Understanding Rheumatoid Arthritis Pain and was made possible by a grant from Sanofi Genzyme.