COVID-19 Guidance Often Neglects People With Rare Diseases

changing vaccine attitudes

Lara Antal / Verywell

Key Takeaways

  • In some states, COVID-19 vaccine rollouts did not prioritize people with some rare diseases.
  • Not having enough information about how COVID-19 may impact someone’s rare disease can affect people’s mental health. 
  • Rare Disease Day (February 28) raises awareness for the challenges people who live with rare diseases face.

In mid-March 2020, with the agreement of my then-rheumatologist, I decided to leave New York City just as it became the epicenter of COVID-19. As someone who lives with vasculitis, I was afraid of how my body would react to the virus. Under my rheumatologist’s guidance, I needed to take an abundance of caution when it came to COVID-19.

Vasculitis is a rare condition that involves inflammation of the blood vessels. Because of this, I was extremely worried about how COVID-19 (commonly known for triggering inflammation in the body) could exacerbate my existing symptoms of vasculitis, which include severe fatigue, chronic pain, and not being able to smell that well.

Despite being at high risk for complications, under Massachusetts’ COVID-19 vaccine rollout I didn't qualify for an early vaccine before it became available to the general public because my disease was not on their list. I had not received a solid organ transplant, and my medications were not immunosuppressive enough. My rheumatologist was understandably cautious of putting me on immunosuppressive drugs—like over 20 mg of prednisone—because they could affect my ability to fight off COVID-19. And information about COVID-19’s impact on rare diseases like mine was scarce then.

The Lancet Rheumatology published an international study in November 2021 which found that around 15% of people, prior to being vaccinated against COVID-19, who had vasculitis died after contracting COVID-19.

At the time, Massachusetts did expand its guidelines slightly to include rare conditions like cystic fibrosis after a push from the Cystic Fibrosis Foundation. But not everyone has a rare disease with advocacy groups pushing for change at a state-wide level.

From my conversations with other people who live with rare diseases, I know that I am not alone in being frustrated by the lack of guidance on COVID-19 for people with rare diseases.

This Rare Disease Day it’s even more important to highlight the movement on rare diseases, which is “working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.” Without knowledge and research about these conditions, high-risk people like me may continue to be left out of public health policies and guidelines.

Having to Advocate For Yourself

One major issue with COVID-19 vaccine and booster guidelines is that they vary significantly state by state. If I stayed in New York City, I would have been able to get the COVID-19 vaccine in February 2020, but I could not get vaccinated in Massachusetts until April 2020.

The way some chronic illnesses impact someone’s body makes them high risk for getting COVID-19. But many of these conditions weren’t prioritized during vaccine allocation. Rare disease patients may often have to advocate for better health treatment, and when it comes to COVID-19 vaccines, it is unfortunately not that different.

“The Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP) makes recommendations on the use of COVID-19 vaccines and boosters,” Amy Hajari Case, MD, senior medical advisor for education and awareness at Pulmonary Fibrosis Foundation, told Verywell. But these recommendations take time to take effect at the state level.

For example, the CDC currently recommends that people 5 and older who are moderately or severely immunocompromised receive an additional dose of the Pfizer-BioNTech vaccine 28 days after their second primary dose of Pfizer-BioNTech. The CDC recommends people 18 and older who are moderately or severely immunocompromised do the same, but they do not have any additional recommendations for additional shots for people who received Johnson & Johnson’s Janssen vaccine.

“When the ACIP updates recommendations on optimal vaccine dosing, there may be a delay before local guidance reflects guideline changes,” Hajari Case said. “In this case, a physician’s order reflecting current ACIP recommendations could be helpful.”

Who Qualifies for a Additional COVID-19 Shots?

According to Johns Hopkins Medicine, people who may qualify for an additional shot include those who:

  • Have been receiving active cancer treatment for tumors or cancers of the blood 
  • Received an organ transplant and are taking medicine to suppress the immune system
  • Received a stem cell transplant within the last two years, or are taking medicine to suppress the immune system 
  • Are diagnosed with moderate or severe primary immunodeficiency (such as DiGeorge syndrome or Wiskott-Aldrich syndrome) 
  • Are diagnosed with HIV and have a high viral load or low CD4 count, or are not currently taking medication to treat HIV 
  • Are taking drugs like high-dose steroids or other medications that may cause severe suppression of the immune system

Hajari Case shared that it is important for researchers to continue to find more information on how healthcare providers can better treat people with rare diseases who contract COVID-19.

“As researchers learn more, we, in turn, are able to continually improve the safe care, outlook and treatment for patients living with rare diseases like pulmonary fibrosis during the public health crisis,” Hajari Case said.

Difficulty Coping With the Unknown

Even two years into the COVID-19 pandemic, there has not been enough research into how certain rare diseases may impact someone’s response to COVID-19.

Billie Katz, PsyD, a licensed clinical psychologist and assistant professor in psychiatry at Icahn School of Medicine at Mount Sinai, told Verywell “this lack of information to be both a cause and a symptom of why it is incredibly difficult to cope with the current circumstances.”

“This is incredibly difficult due to the overwhelming sense of uncertainty, which is often a breeding ground for increased feelings of stress and anxiety,” Katz added. “It is also important to consider that we are approaching two years of living in this pandemic, during which the coping resources one may have had in March 2020, are long depleted.”

Katz recommends that people who live with rare diseases consider taking the following steps to take care of their physical and mental health:

  • Take care of your physical health. Make sure you are in contact with your physicians and make alternative arrangements for telehealth sessions or extra COVID-19 precautions so you feel safe during in-person visits. Additionally, continue taking routine preventative health measures and ensure you have refills of medications.
  • Find stress management techniques that are effective for you. Remember that there is no one-size-fits-all when it comes to finding adaptive and helpful coping strategies. Stress management can be active (exercise or engaging in a pleasant activity) or more passive (listening to music, looking through photos of happy memories, or watching your favorite show or movie).
  • Take breaks from consuming the news if it is leading to increased feelings of worry and fear
  • Connect with individuals in similar circumstances via Facebook groups, advocacy organizations, and more
  • Consider reaching out to a mental health professional for additional support

Rare Diseases Need to Be Better Understood

The lack of COVID-19 guidelines specific to rare diseases at federal and state levels highlights already existing gaps about how people with rare diseases need more support from both their communities and the medical field. More research on rare diseases is incredibly crucial.

“Supporting ongoing research and legislative advocacy efforts is critical to help drive earlier, accurate diagnoses, find better treatments, and transform the lives of people living with rare diseases,” Hajari Case said.

By the time I was diagnosed with vasculitis, my symptoms were so out of control that I had to leave university to treat them. I often wonder if an earlier diagnosis would have led to my vasculitis symptoms being more controlled today. I had all the symptoms of vasculitis, but it took me a while to find a doctor who recognized it and diagnosed me.

According to Hajari Case, I am far from the only person with a rare disease who gets a diagnosis late due to doctors not recognizing and diagnosing rare diseases.

“Because the signs, symptoms and risk factors of rare diseases are often unfamiliar, it can be difficult for the general public or primary care physicians to diagnose, leading to late-stage diagnosis,” Hajari Case said.

What This Means For You

The National Organization for Rare Disorders (NORD) is a patient-advocacy organization that offers resources and information for people who live with rare diseases. NORD has a COVID-19 Resource Center for people who live with rare diseases and their loved ones. You can also look for resources from advocacy groups from people who live with your specific rare disease.

The information in this article is current as of the date listed, which means newer information may be available when you read this. For the most recent updates on COVID-19, visit our coronavirus news page.

4 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Centers for Disease Control and Prevention. COVID-19 vaccines for moderately or severely immunocompromised people.

  2. Sattui SE, Conway R, Putman MS, et al. Outcomes of COVID-19 in patients with primary systemic vasculitis or polymyalgia rheumatica from the COVID-19 Global Rheumatology Alliance physician registry: a retrospective cohort studyLancet Rheumatol. 2021;3(12):e855-e864. doi:10.1016/s2665-9913(21)00316-7

  3. National Organization for Rare Disorders. Idiopathic pulmonary fibrosis.

  4. Johns Hopkins Medicine. Booster shots, third doses and additional doses for COVID-19 vaccines — what you need to know.

By Julia Métraux
Julia Métraux is a health and culture writer specializing in disability.