Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

Vaccination is especially important for those who have a greater risk of developing serious complications from viruses like COVID-19. This includes people living with underlying medical conditions, like autoimmune and inflammatory rheumatic diseases (AIIRD), that may weaken the immune system due to disease or medications. Because of that, researchers are looking into understanding the patient perspective on receiving vaccines.

During the 2022 annual meeting of the American College of Rheumatology (ACR) Convergence, research on vaccine hesitancy uncovered the concerns of rheumatology patients who had not yet received the COVID-19 vaccine. Their primary worry revolved around the lack of available long-term safety data. Furthermore, the research revealed that among those who had received the initial vaccination but had not yet received a booster dose, the most prevalent reason cited was the absence of a recommendation from their health care provider.

Now, a new study, presented at ACR 2023, titled “COVID-19 Vaccine Uptake, Hesitancy, and Flare in a Large Rheumatology Practice Network,” looks into the factors contributing to COVID-19 vaccine hesitancy among patients with rheumatic diseases. Additionally, it explores the risk of disease-related flare-ups following vaccination in this population.

“We wanted to see what COVID-19 vaccine and booster uptake was like among patients with AIIRD compared to patients without these conditions, and what possible reasons for vaccine hesitancy might be,” says study author Kelly Gavigan, MPH, Director of Data Management and Analytics at the Global Healthy Living Foundation (GHLF). This data holds significant relevance because individuals with AIIRD “are at a greater risk of infection in general as well as COVID-19 related complications because of their conditions and the medications they take to treat their conditions,” she continues.

The study focused on rheumatology practices who were members of the Excellence Network in RheumatoloGY (ENRGY) practice-based network who treat patients with autoimmune and inflammatory rheumatic disease.

About the Study

Study participants completed a tablet-based survey that included questions about COVID-19 vaccine status and why they might not receive a vaccine or booster. Based on their answers, they were then asked more questions about why they did not get a vaccine, or their plans to get additional shots. This information was then analyzed to understand the differences between vaccination status and vaccine/booster hesitancy while also comparing AIIRD to non-AIIRD patients.

Key Findings on Vaccine Hesitancy

Out of the more than 61,000 participants in the study, 89 percent reported having received at least one dose of the COVID-19 vaccine, and 68 percent reported having received at least one booster shot.

Patients with AIIRD were found to be 32 percent less likely to have received the initial vaccine dose and 10 percent less likely to have received a booster shot compared to individuals without AIIRD. Among those who expressed hesitancy, their concerns primarily centered around safety (28 percent) and potential side effects (23 percent). The primary reason for booster hesitancy among this group was the absence of a recommendation from their health care provider.

It’s important to note that not all individuals who initially expressed vaccine hesitancy remained hesitant. Among those who were initially hesitant about receiving the vaccine, 12 percent ultimately went on to receive a dose, and for those who were initially hesitant about getting a booster shot, 39 percent later reported receiving one.

Gavigan encourages open conversation between patients and their providers about vaccination. “It’s important for patients with AIIRD to speak with their doctor about their vaccine concerns,” she says. “Among the people who were booster hesitant, the top concern was that they had not been told by their doctor to get a booster dose, so it’s also important that doctors are initiating these conversations with their patients as well.”

Key Findings on Disease-Related Symptoms Post Vaccine

The researchers also aimed to better understand the patient experience following a vaccination, specifically whether the vaccine triggered any disease-related symptoms. Among those who received the COVID-19 vaccine, 23 percent reported experiencing a flare-up of their disease. The study’s findings also revealed that there were no heightened odds of a flare-up or worsening symptoms observed, regardless of whether individuals had a rheumatic disease or not.

“It was encouraging to see from this data that AIIRD patients did not have an increased likelihood of reporting a flare or worsened disease activity after receiving a COVID-19 vaccine or booster compared to non-AIIRD,” says Gavigan, noting that concern about the vaccine causing a flare was a top concern among people who were hesitant about getting the vaccine.

What This Means for You

Research like this provides important information to improve future vaccination efforts to better understand and protect patients.

Talk to your doctor if you have questions about vaccine safety or efficacy. “Shared decision-making with your doctor is very important when it comes to vaccines among AIIRD patients,” says Gavigan. “It’s important for the patient and the doctor to talk through the pros and cons, the concerns, and the data so that a decision is made that is informed and best suits the needs of that unique patient.”

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Osteoporosis is a condition that often occurs with age as you naturally start to lose bone mineral density and bone mass, which impacts the structure and strength of your bones. As a result, this condition increases the risk of broken or fractured bones. For some people, the first sign of osteoporosis is a bone fracture. Unfortunately, once you have one fracture, your chances of having another one (secondary fracture) increases.

Osteoporosis treatments can help protect and preserve your bone health. Some treatments aim to prevent further bone loss while others can even help build bone back.

In a recent study presented at The American College of Rheumatology (ACR) Convergence in San Diego, CA, researchers, including some from the Global Healthy Living Foundation (GHLF), look into what matters most to patients when it comes to osteoporosis treatment. They are using this information to build a treatment-decision making tool that will make it easier for patients to explain these preferences to their doctors. With this information at hand during a future appointment, patients and health care providers can work together to make shared decisions about which osteoporosis treatment is best for the individual patient.

The study, titled “Osteoporosis Treatment Attributes and Levels for an Online Decision-Making Tool for Patients: Findings from Adaptive Choice-Based Conjoint Analysis” was conducted in two parts.

For part one, researchers conducted a survey of more than 300 osteoporosis patients to gauge how they ranked the importance of six specific osteoporosis treatment attributes:

1. Efficacy to prevent spine fractures
2. Efficacy to prevent hip fractures
3. Way the osteoporosis medicine is given (e.g. orally, via injection, etcetera)
4. Risk of serious side effects
5. Time in between doses of medication
6. Risk of non-serious side effects

Researchers found that out of all six osteoporosis treatment attributes, the three most important attributes for surveyed patients were efficacy to prevent hip fractures (31%) followed by the way medicine is administered (17.5%) and the risk of serious side effects (16.6%).

According to Kelly Gavigan, Director of Data Management and Analytics at GHLF, and study researcher, the fact that the score is nearly double that of the other characteristics shows that people specifically want medication to protect from a hip fracture. Gavigan mentioned that patients’ strong preference for preventing hip fractures is revealing and could be for a variety of reasons — from hip fractures being one of most discussed fractures when learning about osteoporosis to patients viewing hip fractures as especially debilitating.

Responses to this survey informed part two of the study, in which patients participated in a refined version of the survey through an online osteoporosis treatment-decision making tool. The tool expanded the descriptions of the six treatment attributes. After the participants answered the tool’s questions, it generated a tailored report for each patient based on their responses about treatment attribute preferences.

When it comes to making treatment decisions, Gavigan emphasized the importance of patients being able to grasp their preferences based on what the medications can actually do. “We wanted to make sure the [medication] attribute [preferences] were not hypothetical,” she says. By doing so, the tool produces information for the patient that they can realistically use in conversation with their doctor about their preferences on real functions, effects, and methods of use of various osteoporosis medications.

The study’s findings are helping to improve the online tool, which will soon be widely available to osteoporosis patients.

What This Means for You

Understanding your osteoporosis treatment preferences is crucial and can help you take a more active role in your bone health. When you know what you value most in a treatment (and what is less important), you can have more meaningful conversations with your doctor. It’s not just about following advice; it’s about making choices together that fit your life. That’s the aim of shared decision making, and it can lead to a personalized treatment plan that not only protects your bones but also your peace of mind.

Stay tuned for more updates on the launch of GHLF’s treatment decision-making tool and visit GHLF’s StrongBonesAndMe.org site to learn more about osteoporosis, fracture prevention, and after-fracture care options.

Be a More Proactive Patient with PatientSpot

PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. By joining, you can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and you can share this information with your doctor. Learn more and sign up here.

Living with a chronic illness can bring unexpected challenges that may alter our plans and timelines. Symptoms like swollen joints, fatigue, pain, muscle weakness, or instability can make previously attainable goals seem out of reach. However, it’s important to remember that these obstacles don’t define us, and there are ways to adapt and thrive. 

Catina Morrison, a registered nurse, chronic illness coach, patient advocate, and business consultant, understands firsthand the disruptions chronic illnesses can cause. She herself lives with rheumatoid arthritis, fibromyalgia, and endometriosis. Despite the daily challenges these conditions present, she has successfully set and achieved her goals. 

Catina’s expertise and experience have inspired her to help others do the same. She is the Founder and CEO of Nurse Loves Essentials, a blogger, and the host of the Inflamed Sisters Thriving podcast.  

Here, Catina shares some of the tactics she uses to set effective and measurable goals, proving that living with a chronic illness doesn’t have to hinder your aspirations. Read on to gain valuable insights from Catina’s expertise and experience. 

Preparing to Set Goals

Catina asks herself the following questions when preparing to set goals: 

1. How much is this going to affect me? A new goal cannot succeed at the expense of what is most important in her life. 
2. How much is this going to cost me in terms of time and energy, when inflammatory conditions I live with cause chronic fatigue? Prioritizing her mental health and wellness is critical for Catina, so she takes active steps to ensure her well-being and self-care is always put forward first. 
3. What are my non-negotiables? For Catina, her non-negotiables are faith, family, and health. If any goals push these non-negotiables aside, then it’s time to reassess goals. 

Setting Short-Term Goals

Identify short-term goals you intend to accomplish in the near future.  

What are your short-term goals?

I want to be able to __________________________ today/this week. 

Examples:  

• I want to be able to cook a meal today without extreme pain and fatigue.  
• I want to get dressed without extensive pain. 
• I want to be able to drive my kids to school. 
• I want to go to work, then go out to dinner with friends tonight.

Setting Long-Term Goals

Identify long-term goals you intend to accomplish in the near future. 

What are your long-term goals?

In six months from now, I want to be able to ______________________________  

In two years from now, I plan to be able to _______________________________ 

Examples:  

• In four months, I want to be able to bike for 10 miles and not be in a terrible flare for weeks afterward. 
• In six months from now, I want to be able to walk at least three miles five times or more per week. 
• In one year, I want to go on a moderate hike. 
• In eight months, I want to travel to my friend’s wedding. 

What Are Your Goals?

We asked our CreakyJoints community what goals they have right now. 

• “This week I would like to hoover and mop my floors. Over the next four months, I would like to renovate my small spare room.”  — MP 
• “I have a goal bank. In the last few years, I’ve upped my game at work, learned to paint with pastels, acrylics, and watercolors. This year I’m learning French… Next year, I want to learn to play the keyboard (guitar is a no-go with my hands).” — NK 
• “Today I’m okay. I vacuumed and baked cookies. I’ve gotten so weak from being afraid to do things, so longer term, I’d like to build up strength.”  — TZ 
• “Be active more than an hour a day; return to the pool for an hour at a time.” — MP 
• “I don’t know what my goals are right now. Just maintaining my mobility at this point. I will say though that I have had to adjust my expectations of myself so that I don’t set goals and fail.”  — SM 

Making Your Goals SMART

SMART goals are Specific, Measurable, Attainable, Relevant, and Time-Bound. We think of SMART goals when it comes to production and meeting goals at work, however, why can’t this apply to our own health care or personal goals?  

Create a SMART goal for your own health care journey.

Example 1: 

• Specific: I want improve my walking pace to participate in a 5K six months from now. 
• Measurable: Using a fitness tracker, I will collect data to monitor how far I can walk in one hour. 
• Attainable: I’ve been walking between 2.5 and 3 miles in one hour 4 times per week.  
• Relevant: My health is important to me, and this exercise goal will help me stay active. I have to walk my dogs in the morning anyway.  
• Time-bound: The 5K is in six months, so I need to be prepared by then.  

Example 2: 

• Specific: I will get better quality sleep every night to have more energy. 
• Measurable: I will measure my sleep quality through the sleep disturbance feature of the PatientSpot  app as my sleep quality improves based on not eating 3 hours before bed and not using my cell phone 30 minutes prior to sleep. 
• Attainable: I aim to decrease sleep disturbance by 10%. 
• Relevant: Getting better sleep directly impacts how much energy I have the next day. 
• Time-bound: I will do this for two months to form better sleeping habits.  

Catina Morrison’s SMART Goal

When Catina embarked on her journey to establish her own business, she approached each day with unwavering intention for at least six months. She went on social media three times a week to share her knowledge about health and wellness. “I just wanted to be able to maybe impact one person,” says Catina. “It was a small thing — just maybe touch one person a day.” 

Catina’s advice to others embarking on a goal-setting journeys: “When you’re setting goals, prioritizing you is vital,” she says. “If you lose sight of self-care, mental health, emotional health, it’s eventually going to affect your physical health.” 

This is especially true when you are living with a chronic condition. “Your body will turn on you if you continue to neglect what’s important,” she says. “Stress and anxiety — you can’t keep suppressing it. For me, that meant pursuing therapy so I could extend the length of time that I have to not only care for myself appropriately, but also to help others and be fulfilled by that.” 

How Your Doctor Can Support Goal Setting

According to Catina, here are some key questions doctors can ask patients to support the goal-setting process. 

We encourage you to bring this list to your next doctor’s appointment and share it with your health care provider. These questions are designed to help you and your doctor work together to create a personalized health care plan that aligns with your goals and priorities. 

• What are we going to be able to do to keep you healthy? 
• While you are reaching goals, how are your labs looking? What is your energy level like? 
• What are your goals for your health? 
• What are your goals for your business? 
• Are you exercising?  
• Are you eating healthy meals? How often? 
• What is your emotional status? 
• Is anxiety or depression impacting your ability to keep working or doing what you like to do? 
• What things are you unable to do because of your health? 
• What is your health keeping you from being able to achieve? 
• Is your health limiting you in developing relationships with others? 
• How does your chronic disease impact your whole life?  
• How are you owning yourself and achieving your goal?  
• Is it limiting you in developing relationships with others? 

Imagine undergoing a series of imaging and pathology tests — and they find nothing. This is what happened to Donna Shipp, who endured MRIs, PET scans, Xrays, bloodwork, and even surgery before getting a diagnosis of IgG4-related disease (also known as IgG4-RD and IgG4-related system disease, or IgG4-RSD). 

The chaos looming within Donna’s body was not visible — until a surgeon opened her up to remove her nonfunctioning kidney. He discovered that her peritoneal cavity was entangled with scar tissue.  

“I had no symptoms of kidney failure,” explains Donna, noting that her creatine levels were trending high but were never flagged as out of range. “Creatine tells you how well your kidneys are functioning.”  

Somehow, despite these radical changes, Donna continued to work 36-hour shifts as a nurse at Brigham and Women’s Hospital in Boston, MA. Being a nurse and working within a research field has made her both keenly aware of changes in her body, and yet, resistant to visit a doctor for minor changes. 

A Surprising Finding Leads to Panic

Donna decided to see her nurse practitioner after experiencing upper gastric pain and suspecting gallstones. Surprisingly, her stomach and gallbladder were perfectly fine, yet the ultrasound report showed severe right hydronephrosis, which means the kidney was swollen and could not eliminate urine as it should.  

Yet another ultrasound was ordered with the assumption of a kidney stone, but it turned out to be a blockage in the lower portion of the ureter. It was highly suspected for malignancy.  

The urologist surgeon was unable to break through the blockage to get a biopsy so he sent Donna for a PET scan, which showed one small area that was glowing in her ureter. Donna muddled through the winter holidays thinking she had cancer. Her urologist presented her case to the tumor board and the consensus was to take it out. Donna’s kidney was not responding.  

In May 2023, a surgeon removed Donna’s right kidney and her ureter, the tubes that connect the kidneys to the urinary bladder. “Up until that point, they weren’t convinced it wasn’t cancer,” says Donna. “I was in the hospital and I read my discharge papers. It said it was urothelial cancer. I was shattered.” 

The surgeon was unable to remove the bottom third of her ureter because it was too entangled with fibrous tissue, leading to an unexpectedly complicated surgery. When he opened her up, the surgeon saw the source of the problem, but it was not what he expected.  

Donna’s entire pelvic area back into her peritoneum was full of fibrous tissue. It was saturated with storiform fibrosis and plasmacytes, both hallmarks of IgG4-RD. Plasmacytes are specialized forms of B-lymphocytes that produce antibodies. They synthesize and secrete immunoglobulin. Her urologist suspected retroperitoneal fibrosis, meaning scar tissue develops and can cause chaos in the retroperitoneum, thereby affecting the ureter and kidneys.  

Getting a Diagnosis

Donna was fortunate to receive a diagnosis within eight months, a significantly shorter timeframe than the years (or decades) many patients typically endure. Her ability to establish connections with doctors, stemming from her nursing background, played a crucial role in this expedited process. 

There is currently not one diagnostic test that can determine if a patient has IgG4-RD, which made it critical for Donna to work with her doctors to examine findings from multiple vantage points, including results from clinical presentations, blood tests, and radiological imaging. With many variations of how the organs and tissues can be affected by IgG4-RD, the disease is challenging to diagnose. 

The Anxiety of Not Knowing

Donna is currently on a six-week regimen of steroids, along with two rounds of Rituxin (rituximab). Between treatments, she waits, and then a few months later, undergoes more scans to look for changes. She repeats this cycle with the goal of remission. Keeping track of even the most minor symptoms is critical as she listens for changes within her body. 

Understandably, Donna admits to having anxiety and fear about symptoms. “My greatest fear is not knowing what is happening in my body between treatments,” she says. “What if the scar tissue is strangling my appendix? What is it doing? What if it’s attacking my other kidney? Scanning me this year didn’t really show anything, so how will we know if something’s going on? I still worry about the disease process in the interim.” 

Donna’s Tips for Advocating for Yourself

Here, she shares what she’s learned to help other patients get a quicker diagnosis and get started on treatment.  

• Ask the questions. “Ask all of the questions,” she says. “No one knows your body better than you. When you aren’t satisfied with answers, keep asking questions. You shouldn’t know all the answers off the top of your head.”  
• Challenge your doctors. “Your doctors could miss things too, so it’s okay to point things out [and] challenge them sometimes,” says Donna. “Have doctors explain it to you until you understand.” 
• Become an expert. “When you get diagnosed with something, you should ultimately become the best specialist — the best expert — for yourself,” she says. 
• Connect with other people with IgG4. Donna found support by connecting with an IgG4 Facebook group. “If I don’t see a post every couple of days, I’ll go online and see what people are going through. There are all these other aspects to IgG4-RSD and people have different symptoms, and yet we are all on the same or similar treatments. It’s crazy.” 
• Don’t give up. “This is your life; this is your body. If you can’t find the answers you’re looking for, keep looking until someone listens to you and really hears you. Find the answers you need,” she says.

The Health Advocates

Listen to Niki C. Beamon share her 17-year journey toward an IgG4-RD diagnosis on the latest episode of The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. Listen now.

This article was made possible with support from Horizon Therapeutics. 

Over the years, Nika C. Beamon has faced a staggering 37 medical procedures, each one a piece of a complex puzzle that would eventually lead to a diagnosis of the multi-organ inflammatory disease, IgG4-related disease (IgG4-RD). Her journey is one of resilience, patience, and a relentless pursuit of answers.

It all began with a series of bewildering symptoms that emerged during her undergrad years at Boston College. Nika experienced unexplained fatigue, recurrent fevers, and relentless joint pain. “We started to realize my junior year in college that something wasn’t quite right,” she says. “But, of course, you go to the clinicians there, and they tell you, you have mono.”

Her health continued to spiral, with new symptoms and more misdiagnoses. “I got sicker and sicker…. spontaneous fevers, joint pain, [and] now other strange things,” recalls Nika. “Over the years, I’ve had extensive gastro reflux disorder; I’ve had pancreatitis, at some point, I’ve had non-alcoholic fatty liver disease…I’ve had pseudo tumors, just cysts that appear random places, and chronic lymphadenopathy, where my lymph nodes had been swollen…I had seven surgical lymph node biopsy and removals one year, and then had to repeat it the following year because they suspected cancer.”

When she entered her 30s, Nika’s health challenges “got even more interesting,” she says. She experienced two strokes and two transient ischemic attacks (TIAs). These neurological events left her medical team puzzled, and to her frustration, they conducted multiple tests for conditions commonly found in African American women, despite her symptoms not aligning with those conditions.

“You must have lupus, you must have sarcoidosis, you must have rheumatoid arthritis, you must have sickle cell anemia, you must have something that’s common for people who are African American,” she recalls. “And even though I did not, they would just repeat those tests because they didn’t know what else to do.”

The Road to Self-Advocacy

Nika decided it was time to advocate for herself, recognizing that no one else would care more about her health than she did. She began carrying her medical records, including scans, X-rays, and reports, wherever she went. Drawing on her journalism skills, she began seeking out top rheumatologists.

“I just started making appointments,” she recalls, “And on my third appointment, I saw a rheumatologist here in New York, who at the time was in the top 10 for rheumatologists in the country. I brought in my files, and she said, okay, leave them and come back in a week. And sure enough, I came back in a week, and she writes down on a piece of paper, you have [IgG4-RD]. First, it was a relief. And then I looked at the paper and was like, what the hell is that? I had no idea what IgG4-RD was — it meant nothing to me, it meant nothing to anybody that I told it to.”

A Successful Career Despite IgG4-RD

For years, Nika kept her health struggles under wraps, with few of her colleagues aware of her disease. Her career flourished. She has an impressive 25-year track record as a newswriter and producer within the ABC family, including a stint at ESPN Classic. She currently holds a role at WABC-TV in New York, marked by her significant contributions, including a Peabody Award for their exceptional 9/11 coverage and two New York Emmy awards.

Sharing Her Journey Became Therapeutic

In 2014, Nika got a nudge from her coworker, who was one of the only people who knew of her IgG4-RD diagnosis, to submit a story to The Huffington Post. “Rita Wilson, who is Tom Hanks’ wife, started a column and was asking for stories, almost like survival stories. I thought, ‘There’s no way. I tell other people’s stories; I don’t tell my own.’” Nika went for it — and her essay was promptly picked.

The essay was a catalyst for her memoir, “Misdiagnosed: The Search for Dr. House,” which was published in 2014, and tells the story of her journey of IgG4-RD, including her hospital trips, procedures, and rollercoaster of emotions that came with it.

She named it after the medical drama series House (also called House M.D). “My now-husband says to me, ‘Did you ever watch the show about a master diagnostician who can diagnose the rarest conditions? Wouldn’t it have been cool if you had that?’”

Nika began watching the show, finding inspiration for the memoir’s title in the process. She explains, “I tell people how I went through the process of trying to figure out what was wrong with me and then figuring out you know, what you need to do to save your life.”

Tips for Self-Advocacy and Living with IgG4

Here, she shares some of the lessons she’s learned about self-advocacy and how to be a proactive patient:

• Listen to your gut. “When your gut tells you something is wrong, don’t give up until you get at least an answer as to what that is. With autoimmune diseases, there is no solution, because there is no cure for most of them. But what you can do is get better treatments.”
• Do your homework. “Make sure that the doctor is right for what’s going on with you, and that you have a doctor who is listening to you.” Ask how you can reach them outside of office hours in case something else pops up or you remember something else.
• Keep a diary of the symptoms. “When the pain starts, write it down. You got to write down your symptoms because you’ll forget one.”
• Bring all your medical records. “It’s important for two reasons. Not only can your other doctor see the information, but you can also see them yourself. You can look at test results and see when they’re out of range.”
• Don’t hide the pain. “We all want to be brave; we all want to be these heroes — be like I can take it. You don’t have to take it; the world is not necessarily designed for you to just take it. You do need to let [your doctor] know that you’re in pain. Never just pick the perfectly happy face on the chart.”
• Ask about financial assistance. Nika advises others to inquire about generic alternatives, patient assistant programs, samples, and financial assistance options to alleviate the financial burden. “These diseases are debilitating for most people. If they give you a pill when it’s very expensive, [ask], does this come as a generic? You don’t want to skip it simply because you can’t afford it; you just got to find another way around it.”

This article was made possible with support from Horizon Therapeutics. 

The Health Advocates

Hear more from Nika in an episode of The Health Advocates, a podcast that breaks down major health news of the week to help you make sense of it all. Listen now.

Falls might not seem like a big deal to many, but for older adults or those with or at risk for the bone-thinning disease osteoporosis, they can have serious consequences. Falling can lead to severe injuries, make daily tasks harder, reduce your quality of life, and take away the freedom to live independently. In some cases, falls can even be life-threatening. 

Endocrinologist Jessica Rachel Starr, MD, an Assistant Attending Physician at Hospital for Special Surgery, says she sees at least one or two patients per day who she wishes she met a decade before — not after — a fracture.  

She recalls one patient who was told to start osteoporosis treatment 10 years ago but resisted due to fear. “Her friends told her scary things about [the medication]. And now she’s stuck in an assisted living [facility] because she broke her hip after breaking her spine and her family wouldn’t allow her to be home anymore,” says Dr. Starr. “And I think that’s really sad and states that manifestation of a disease that, truthfully, is very treatable and preventable.” 

11 Steps for Fracture Prevention

Not only is osteoporosis preventable, but so are the fractures that can result from it. With proactive measures, regular screenings, and lifestyle adjustments, you can strengthen your bones and reduce the risk of debilitating injuries. Here are a few steps to consider. 

Re-Evaluate Your Home

As you get older, it’s smart to re-evaluate your home, even if you’ve been living there for decades. “What was safe when you were 40 is not okay anymore when you’re 75 or 80,” says Dr. Starr. Look out for potential hazards like loose rugs. Make sure there’s proper lighting, especially near staircases, and that banisters are sturdy. If your bathtub is high, consider installing support handles to help you get in and out safely. 

Mind Your Movements

Something as simple as being more conscious of your everyday movement can be a powerful fracture prevention step. “Slow down and don’t go up and down the stairs carrying things,” says Dr. Starr. “Go up and down the stairs holding the banister.” 

Choose Smart Footwear

Wear comfortable shoes with good support, a broad heel, and non-slip soles. And avoid slipper with worn-out soles, says Dr. Starr, or heels in the rain or snow.  

Don’t Brave the Weather

Unless necessary, stay home during slippery weather conditions like ice, snow, or heavy rain. If possible, have someone else run errands for you. “I can’t tell you how many people come into the office when it’s terrible weather to see me just because they have an appointment. And I’m like, ‘Oh my goodness, you have advanced osteoporosis, you’re out in ice; you’re out in the rain. That’s not what you should be doing.’” If you can’t wait to reschedule your in-person visit, consider asking about telehealth options to stay safe and still get the care you need. 

Pay Attention to Your Eyewear

It’s essential to keep your glasses clean and in top condition to avoid blurred or obstructed vision, which could lead to falls. If you wear bifocals, use extra caution on stairs; the change in lens magnification can distort your depth perception. Additionally, on bright days, wearing sunglasses can reduce glare, helping you spot potential tripping hazards and further reduce your risk of accidents. 

Schedule Regular DEXA Scans

Be proactive and prioritize early screening before encountering a fracture. This includes a DEXA scan, which is a low-radiation X-ray that checks your bone density and can pinpoint osteoporosis or its risk. Consistent screenings can also help track bone health. Women above 65 and men over 70 should have regular checks. Your doctor might recommend more frequent scans based on your health, family history, and certain medications.  

However, if you’ve had a fracture, especially in areas like the lumbar vertebrae, be aware of the DEXA scan’s limitations. “Once you fracture one of the four lumbar vertebrae that we use to interpret bone density, you can’t use that result in a bone density test because it’s invalid,” says Dr. Starr. In this case, your provider will need to make a decision based on clinical observation. 

Prioritize Your Treatment

If you’re already living with osteoporosis, it’s crucial to regularly discuss your treatment plan with your doctor. Ensuring you’re on the most effective treatment can make a significant difference in protecting your bones and preventing fractures. There are various classes of treatments available. For instance, antiresorptive treatments help maintain bone structure while anabolic treatments stimulate bone formation. By understanding and choosing the right approach, you can actively work toward better bone health. 

Ask About Your Medication

Talk with your doctor about the medications you are taking and whether they have any side effects, like making you feel dizzy or unsteady, that could lead to falls. Having these facts ahead of time can help you stay safe and avoid any unexpected tumbles. 

Make Smart Lifestyle Choices

If you smoke, consider quitting. Cigarette smoking can weaken bone density and heighten osteoporosis risks. Remember, it’s never too late; quitting even later in life can help counteract bone loss tied to smoking, reducing the risk of subsequent fractures.  

Secondly, moderate your alcohol intake. Aim for no more than one drink daily for women and two for men. Excessive drinking can elevate your chances of developing osteoporosis. Plus, alcohol can affect your balance and reflexes, reaction time, and ability to judge distances, which can all lead to an increased risk of falling. 

Do Weight-Bearing Exercise

Weight-bearing exercises like walking or resistance training are crucial for protecting against osteoporosis and safeguarding bone density in those with osteopenia or osteoporosis. As muscles and bones resist gravity’s pull during these activities, the bone health benefits increase with the intensity of the load.  

Dr. Starr notes that research indicates certain weight-bearing activities can reduce the risk of hip fractures by up to five percent. Weight-bearing exercises enhance balance, posture, and agility, thereby decreasing the chances of falls and related injuries. 

“If you become inactive because you are worried you are going to fall and fracture, that actually will become a self-fulfilling prophecy,” warns Dr. Starr. “If we don’t use our bones, if we’re not doing weight-bearing exercises, we will then lose our bone from inactivity.” 

Note: Exercise safety is key to preventing fractures, so talk to your health care provider to develop an appropriate workout routine for you. 

Monitor Your Weight

Losing weight unintentionally as you get older can be a sign of becoming frail. Dr. Starr often encounters patients who’ve lost weight and aren’t sure why. It might be due to life changes like a loved one’s passing or children moving out, she says. “That kind of unintentional weight loss is actually very bad because it’s also associated with severe muscle loss, known as sarcopenia,” says Dr. Starr. Weakened muscles heighten the risk of falls, and with compromised bone strength, fractures become more likely.  

Remember, a little prevention and care today goes a long way. By embracing regular check-ups and making small, mindful changes in our daily lives, we’re not just looking after our bones but ensuring brighter, more active days ahead. 

Learn more about what you can do to prevent fractures and strengthen your bones at StrongBonesAndMe.org. 

This article was made possible with support from Amgen. 

“Osteoporosis is a silent disease — until it’s not,” says endocrinologist Jessica Rachel Starr, MD, an Assistant Attending Physician at Hospital for Special Surgery. She explains that osteoporosis just means that the natural holes or pores in our bone are bigger than they should be on a bone density test.  

“When they get bigger beyond a certain pre-defined score, we call it osteopenia,” says Dr. Starr. “And when it gets even bigger than that, we call it osteoporosis. But just having those holes in the bone and having them be large is painless.” 

But here’s the thing: even if you don’t feel it now, the risks are real. When these holes or pores get bigger, your bones get more fragile, your muscle mass diminishes, and your risk of falls and fractures increases.  

While osteoporosis alone isn’t life-threatening, it can result in significant fractures, leading to premature death in approximately 20 percent to 40 percent of affected individuals following an injury.  

The good news: understanding osteoporosis, its treatments, and methods of prevention can ensure healthier bones and a more resilient skeletal system. 

Understanding Osteoporosis and Healthy Bones

Our bones are dynamic structures, continuously breaking down and rebuilding. “Our body is constantly remodeling, even as adults we’re always building bone and breaking bone down,” says Dr. Starr.  

However, when there’s an imbalance in the process — more bone being lost than being built — conditions like osteoporosis can develop. This imbalance can be influenced by numerous factors, including aging, a low body weight, decreased levels of sex hormones, smoking, and the use of certain medications like corticosteroids. 

Ensuring strong bones requires attention at all stage of life. Osteoporosis isn’t just an issue confined to older individuals. An increasing number of people in their 20s, 30s, and 40s are receiving diagnoses.  

While immediate medical treatment may not be necessary for every diagnosis, especially in younger, fit individuals with milder forms of osteoporosis, it’s essential to engage in an open conversation with healthcare providers about steps to fortify bones and prevent fractures. 

“Doing something is better than doing nothing,” says Dr. Starr. “If someone promises me they’ll attend physical therapy for strength training and take some calcium, it’s still a step forward from when I first met them at the door where they weren’t doing those things.” 

Treatment Options for Osteoporosis

If you and your provider decision on osteoporosis medication, there are several options, including:  

• Anabolic agents: These medications stimulate bone formation and are recommended for those with severe osteoporosis. 
• Anti-resorptive drugs: These medications prevent bone loss by blocking the action of osteoclasts, cells that break down bone tissue.
• Bisphosphonates: This group of drugs is the primary treatment for osteoporosis. They’re available as oral pills or IV infusions and work by reducing bone loss and enhancing bone density. Options include Actonel (risedronate), Boniva (ibandronate), Fosamax (alendronate), and Reclast (zoledronic acid).
• Calcitonin: These medications contain calcitonin, a hormone that boosts bone density, reduces the risk of spinal fractures, and alleviates fracture-related pain. Choices include Calcimar (an injection), as well as Fortical and Miacalcin (both nasal sprays).
• Hormone therapy: Though not recommended as a preventive or treatment measure for osteoporosis in menopausal women, hormone therapy can bolster bone health in women taking it for menopausal symptom relief. It’s also suitable for premenopausal women whose ovaries don’t produce adequate estrogen.
• Parathyroid hormone (PTH): This treatment involves hormones that promote bone formation and reduce bone resorption. Options, such as Forteo (teriparatide) and Tymlos (abaloparatide), are often prescribed for individuals with a high fracture risk, those who haven’t responded to other osteoporosis treatments, or those who’ve experienced side effects from other medications.
• Parathyroid (PTH1) agonists: These drugs increase bone formation and decrease bone resorption. Choices include Prolia (denosumab) and Xgeva (denosumab), both injectable medications designed for individuals at fracture risk or those with advanced breast cancer, respectively.
• Selective estrogen receptor modulators (SERMS): This category comprises one medication, Evista (raloxifene). It has bone-protective, estrogen-like effects without the associated risks of hormone replacement therapy (HRT), which isn’t used to treat osteoporosis anymore.
• Sclerostin inhibitors: This newer treatment is available for postmenopausal women diagnosed with osteoporosis and at high fracture risk. Evenity (romosozumab) mainly promotes bone formation and also aids in reducing resorption. 

Supplements and Dietary Choices for Bone Strength

Diet plays an instrumental role in ensuring bone health, with certain foods naturally rich in bone-boosting nutrients. Daily intake of calcium and vitamin D are also important as they are crucial for building strong bones earlier in life and preserving bone strength as we age. 

Why Calcium

An essential mineral, calcium has been clinically proven to improve bone density at the spine and the hip, says Dr. Starr. However, humans aren’t efficient at absorbing calcium, so in addition to a supplement, it’s importance to incorporate calcium-rich foods into your diet. Sources include dairy products, kale, bok choy, sardines, tuna, chia seeds, sweet potatoes, and figs. 

The Role of Vitamin D

This nutrient helps aid calcium absorption. “If you have vitamin D deficiency, it will be very hard for the body to effectively absorb the calcium,” says Dr. Starr. “And if your vitamin D gets low enough and you can’t absorb the calcium, your body will start breaking down the bone to put more calcium into the blood.” 

Other Supplements

“There’s a lot out there about boron, magnesium, and vitamin K,” says Dr. Starr. “But there isn’t good randomized controlled trial evidence where I would feel comfortable saying to people, yes, go out there and buy this.” 

When shopping for supplements, Dr. Starr stresses opting for products with the United States Pharmacopoeia (USP) seal, which ensures quality, purity, and safe manufacturing processes. Before starting any supplement, consult with a health care professional to ensure it’s right for you and does not interfere with any other medication you are taking.   

The main takeaway: Good bone health is about more than just medicine. It means understanding your body, getting the right nutrients, staying active, and talking with your doctor to ensure proper screening and the appropriate treatment for your age and stage. 

Learn more about what you can do to prevent fractures and strengthen your bones at StrongBonesAndMe.org. 

This article was made possible with support from Amgen. 

In recent years, there’s been an explosion in conversations around manifestation. On TikTok, #manifestation has more than 36 billion views, although the concepts of manifestation and the law of attraction have origins in Buddhism and Hindu scriptures.   

While there are diverse interpretations and methods, at its core, manifestation is about “speaking or thinking things into existence.” For example, if someone is seeking improved health outcomes, they might affirm nightly, “I am so grateful for the effectiveness of my medication,” with the hope of channeling positive energy toward their symptom relief. Rooted in the law of attraction, this philosophy posits that our thoughts and intentions can directly influence the experiences we draw into our lives.

But as manifestation practices grow in popularity, it becomes pertinent to question their applicability in more challenging scenarios, like chronic illness. Can affirming a medicine’s efficacy truly aid in healing? Or does this venture into the realm of toxic positivity, masking the complex reality faced by those with chronic conditions.  

Here, we explore the science behind manifestation and if it should be used to support your health.  

How Manifestation May Work

While studies on manifestation specifically are limited, research does show that your expectations tend to translate into reality (aka self-fulfilling prophecies).  

Tennis players who visualized improving their performance and winning a match against their opponents were more successful than those who didn’t visualize their goals in a 2017 study published in Basic and Applied Social Psychology.   

Meanwhile, researchers have found that positive thinking and optimism can increase lifespan, lower rates of depression, lower levels of distress and pain, give you greater resistance to illnesses, and reduce the risk of death from various diseases, per the Mayo Clinic.  

Of course, there are also very real limitations of manifestation. It can’t dissolve systemic barriers for those who live with poverty, discrimination, and marginalization — and it can’t make an illness that you have no control over go away.  

Still, if manifestation can help you think positively through affirmations (for instance, “I make healthy choices and nurture my body”), it could benefit you in the areas of life you can control.  

Positive and optimistic people often live healthier lifestyles than more negative folks. They exercise more, eat healthier, and tend to not smoke or drink in excess, per the Mayo Clinic. 

The Drawbacks of Manifestation for Chronic Illness

Of course, you may find it frustrating and discouraging if you’re practicing manifestation daily but don’t see any differences in your health condition.  

“Manifestation and the law of attraction can be double-edged swords for individuals with chronic diseases,” says Hannah Mayderry, MEd, a licensed mental health counselor in Jacksonville, FL. “On one hand, positive thinking and identifying what you want in life can be beneficial in coping with a chronic illness. It can lead to better stress management and a more proactive approach to life in general.” 

However, Mayderry adds that it’s key to acknowledge the limitations and avoid toxic positivity that may come as a result of manifestation. 

Toxic positivity comes into play when you feel pressured to suppress or deny your negative emotions or experiences to constantly project positivity. “This can be detrimental because it invalidates genuine feelings and prevents healthy emotional processing,” says Nick Bach, PsyD, a psychologist in Louisville, KY. 

Without striking a balance between acknowledging and addressing negative emotions while also cultivating a positive outlook, you may fall into a trap of blaming yourself for a chronic disease that’s out of your control.   

“When individuals solely rely on manifestation, there’s a risk that they might attribute the progression of the disease or setbacks to their lack of positive thinking or inability to manifest health,” says Mayderry. “This can lead to harmful self-blame.” 

A licensed mental health professional can help you determine if and how it may be beneficial to include manifestation in your holistic approach to health, which should also include self-care, coping strategies, and appropriate health care support like medications.  

Manifestation should not replace evidence-based medications or interventions your doctor recommends. 

Tips for Practicing Manifestation

If you’d like to try manifestation, approach it with a balanced perspective. Practice self-compassion, realize that not everything is in your control, and understand the limitations of positive thinking (especially when it comes to chronic diseases). 

To get started, follow these steps from Easton Gaines, PsyD, a holistic, clinical psychologist in New York, NY. 

• Embrace acceptance: Accept the reality of your chronic disease and embrace the idea of working alongside your health care provider to enhance your overall well-being. Remember, manifestation is not a replacement for medical treatment.
• Set realistic intentions: Instead of striving for unrealistic outcomes or complete healing, focus on setting intentions that prioritize well-being, coping strategies, and an improved quality of life. For instance, “I move my body in some way every day and stay hydrated” is much more realistic than “I no longer have pain.” It allows you to maintain a sense of hope and purpose while managing expectations.
• Cultivate gratitude: Integrate gratitude practices into your manifestation routine. Expressing gratitude for the positive aspects of your life, even in the face of chronic illness, can shift your perspective and enhance emotional well-being. Gratitude can be a powerful tool in finding moments of joy and appreciation.
• Prioritize self-care: Make it a central part of your manifestation approach. Focus on healthy eating, regular exercise, adequate rest, and stress management techniques. Manifestation can serve as a motivational tool to support your self-care practices and maintain a positive mindset.
• Seek support: Connect with others who share similar experiences through support groups or online communities. Sharing your journey, exchanging insights, and receiving support can help alleviate feelings of frustration and isolation. Surrounding yourself with a supportive network can provide encouragement and a sense of belonging.

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In big vaccine news this week, fall COVID-19 boosters will be available in the coming days. The U.S. Food and Drug Administration (FDA) gave the green light to the updated Moderna and Pfizer/BioNTech vaccines for COVID-19. The Advisory Committee on Immunization Practices (ACIP), a group of medical and public health experts who guide vaccination recommendations in the U.S., also met to vote on recommendations for who should get the vaccines.  

On September 12, 2023, they met to review the COVID landscape and discuss clinical recommendations on who should consider an updated COVID-19 vaccine, especially focusing on specific groups like immunocompromised and older individuals.  

Dr. Mandy Cohen, Director of the Centers for Disease Control and Prevention (CDC), also acknowledged the other viruses circulating this season and our preparedness level. “We are in a different place than we were in the beginning of the pandemic, we are in our strongest position to fight COVID as well as flu and RSV,” said Dr. Cohen, during the meeting. “We have tools against all three of these virus pathogens.” 

For many of us living with chronic illnesses or weakened immune systems, the threat of a COVID-19, flu, and RSV feels especially close to home. Being informed about the latest COVID vaccination updates and trends in data can help you work with your care team and support system to stay protected.  

FDA Approvals and Authorizations

A day before the ACIP meeting, the FDA gave updated approvals and authorizations for the mRNA COVID vaccines: 

• Individuals 5 years of age and older regardless of previous vaccination are eligible to receive a single dose of an updated mRNA COVID-19 vaccine at least 2 months since the last dose of any COVID-19 vaccine.
• Individuals 6 months through 4 years of age who have previously been vaccinated against COVID-19 are eligible to receive one or two doses of an updated mRNA COVID-19 vaccine (timing and number of doses to administer depends on the previous COVID-19 vaccine received).  
• Unvaccinated individuals 6 months through 4 years of age are eligible to receive three doses of the updated authorized Pfizer-BioNTech COVID-19 Vaccine or two doses of the updated authorized Moderna COVID-19 vaccine.

The ACIP voted in line with the FDA updates above and recommended: 

• Everyone ages 5 and older is recommended to receive one dose of a 2023–2024 mRNA COVID-19 vaccine. 
• Children ages 6 months to 4 years should complete a multi-dose initial series (two doses of Moderna or three doses of Pfizer-BioNTech mRNA COVID-19 vaccine) with at least one dose of the 2023–2024 COVID-19 vaccine. 
• People who are moderately or severely immunocompromised should complete a two-dose initial series with at least one dose of the 2023–2024 COVID-19 vaccine and may receive 1 or more additional 2023–2024 COVID-19 vaccine doses at least two months after. 
• Bivalent mRNA COVID-19 vaccines are no longer recommended in the United States. 

Here is a look into the data and discussions that took place to get to this decision. 

Available data from the COVID-19 vaccine manufacturers presented at the meeting included clinical trial data (on 101 randomized patients) for the Moderna vaccine and preclinical data (on mice) for the Pfizer-BioNTech vaccine. Conclusions from the data found that the monovalent XBB containing COVID-19 vaccines increases the immune system response again the currently circulating variants and no new safety concerns were identified. 

In the ACIP meeting, a question arose about the Novavax vaccine and what we can expect with authorization for that vaccine. The FDA spokesperson said we know there is interest in alternative to mRNA vaccines and we look forward to potential authorization of the updated vaccine.  

The original Novavax COVID-19 vaccine remains authorized for use as a two-dose primary series. It can be given as a booster in limited situations to: 

• People ages 18 and older who previously completed primary vaccination using any FDA-approved or FDA-authorized COVID vaccine 
• Have not received any previous booster dose(s) 
• Are unable or unwilling to receive an mRNA vaccine and would otherwise not recieve a booster dose 

The bottom line: We are waiting for the FDA to review and potentially authorize the 2023-2024 Novavax vaccine.  

The Current Landscape of COVID

Dr. Natalie Thornburg, lead research microbiologist at the CDC, reviewed the U.S. data from May 27-September 2, 2023 and shared that greater than 90 percent of the circulating viruses are all XBB lineages. While COVID-19 burden is currently lower than at previous points in the pandemic, the absolute number of hospitalizations and deaths is still high.  

Hospitalizations Among Those with Underlying Conditions

The data presented showed that hospitalization rates across all groups have been rising steadily since July 2023. Fifty four percent of children hospitalized had underlying conditions with the most popular being premature, neurologic disorders, and asthma. 

The COVID-NET data from January-June 2023 shows that for adults, rates of hospitalizations were highest among adults older than 75. The most prevalent underlying conditions among adults ages 18 and older hospitalized for COVID include cardiovascular disease, neurologic disorders, diabetes, obesity, asthma, and chronic lung disease.  

Long COVID

As part of the landscape of COVID discussion, long COVID was addressed. The data reviewed showed the prevalence of long COVID was highest among 35 to 49 –year olds. Other noteworthy data points: 

• One in four people  with long COVID symptoms report significant activity limitations  
• Groups associated with a higher likelihood of developing long COVID: 
  • Female sex 
  • Older age 
  • Severity of COVID-19 illness 
  • Underlying health conditions prior to COVID-19 infection 
  • Lower socio-economic status 
  • Did not get COVID-19 vaccine 

• There is accumulating evidence that COVID-19 vaccination reduces post-COVID conditions among both children and adults 

Vaccine Effectiveness in Immunocompromised

During the section of the meeting that focused on COVID-19 vaccine effectiveness, the reviewed data showedthat people who are immunocompromised may have reduced protection after COVID-19 vaccination, compared to those who are not immunocompromised. This aligns with seen in the data throughout the pandemic, where COVID vaccine effectiveness has been lower and waned more quickly for adults with compromised immune systems compared to adults without immunocompromise.  

Because of this, immunocompromised may be able to get additional doses of the vaccine to bolster immune response. 

“In individuals who are immunocompromised, the protection of prior vaccines and infections wanes overtime, and they become susceptible to severe disease again,” says Amesh A. Adalja, MD, FIDSA, FACP, FACEP, Senior Scholar, Johns Hopkins Center for Health Security. “This new vaccine can help enhance immunity to continue protection against severe disease.”  

What This Means for You

For those with compromised immune systems, it’s recommended to get the new COVID vaccine as soon as it’s available. Dr. Adalja points out, “a person can get the RSV vaccine today, the COVID vaccine next week, and the influenza vaccine in October.” While it’s generally advisable to wait until October for the flu shot to ensure coverage throughout the season, should scheduling challenges arise, all three vaccines can be administered together. But, Dr. Adalja warns, anticipate “a sore arm.”

Most critically, your vaccination decisions should be in alignment with the guidance from your health care provider, especially if you’re on specific medications. “People should consult their rheumatologist about the timing,” urges Dr. Adalja. “Ideally, there should be a gap of about four months since their last booster or infection to derive the maximum benefit from the vaccine.”

To find a COVID-19 vaccine near you, visit https://www.vaccines.gov/. With the end of the public health emergencies, it is important to double check your insurance coverage and make sure you are getting the vaccine in network. 

If you are uninsured, there are CDC programs to get vaccinated: 

• Uninsured children will be able to receive COVID-19 vaccines through the existing Vaccines for Children (VFC) program 
• Adults who are uninsured or underinsured will be able to receive no-cost COVID-19 vaccines through the temporary Bridge Access Program for COVID-19 Vaccines 

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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.”

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