The COVID-19 pandemic taught Americans a lot about what the healthcare system can and cannot manage. We watched how it handled the extreme demand for services, changing protocols, and the need for virtual care. That insight, along with a flood of new and conflicting information, challenged the way many people think about their healthcare.
The pandemic highlighted the trust, or lack thereof, patients have in the healthcare system. But for people living with Gaucher disease or another rare condition, trust isn’t optional—it’s a vital aspect of patient care.
We spoke with Claire Sachs, founder and advocate-in-chief of The Patient Advocate’s Chronicle, to understand the role trust plays for people living with a rare disease. Sachs lives with 13 chronic and recurring conditions. She serves on patient advisory boards for the American Board of Internal Medicine (ABIM) Foundation, United States of Care, and the state of Maryland’s advisory board for diabetes. Right now, she’s also working with the ABIM Foundation’s Building Trust initiative, which promotes trust as an essential principle for improving healthcare.
Why Is It Important to Build Trust in the Healthcare System?
Your healthcare is a series of decisions. Which preventive measures will I take? Which provider can deliver the care I need? Should I choose this treatment or that treatment? And when you have a rare disease, even the smallest health decisions can have a big impact on your quality of life.
According to Sachs, there’s a lot to consider when you make health decisions. You must think about the unique details of the disease you live with—how it affects your body and your life. But you also need to pay attention to the ever-evolving science, including new research, cutting-edge technology, and drug development. That’s where the need for trust comes in. You can, and should, read tons of medical information. But your healthcare professionals will have insight you may not have. They will understand how that information relates to your rare condition.
“When you have a chronic condition, whether it’s rare or not, you have to make some pretty heavyweight decisions,” Sachs says. “You need to be able to trust the folks who are giving the information. No matter how long you live in your body with your disease, you are never going to know everything on your own.”
How to Identify Trusted Medical Sources
Trust in the healthcare system may be important, but that doesn’t mean it’s easy to do. According to Sachs, you need to evaluate the information you use to make your health decisions. The information you can trust usually comes from two types of sources:
When considering medical news or research, Sachs recommends that you:
- Evaluate the credentials of the source: Sachs looks to credible healthcare institutions, such as the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), National Organization for Rare Disorders (NORD) and hospital systems affiliated with research universities. “These institutions do credible research,” Sachs says. She adds that even if their messaging is not always on-point, “their research is properly randomized, properly sourced, and they are following a protocol that has been developed over decades and decades.”
- Develop a list of trusted sources: Once you’ve evaluated a source and identified it as trustworthy, add it to a short list of sources that you’ll reference on a regular basis. Your list may include government institutions or reputable hospitals such as the Mayo Clinic or Johns Hopkins. When something about your disease catches your attention from another outlet, verify that information with your trusted sources.
- Focus on medical facts: Teach yourself to only consider the facts of a news story. Ignore any unnecessary language. “Take out words that aren’t actually telling you something medically important to get to the real message,” Sachs says. “With practice, it will become natural.”
- Trust your instincts: Take a step back and ask yourself if the research or news makes sense to you. “When you are a patient constantly dealing with the healthcare system, things are either going to make sense or not,” Sachs says. “Trust that instinct, even when you don’t want it to be right.”
Your medical team
Trust in your medical team is paramount for people living with rare diseases, says Sachs. Trust will develop over time, but building that relationship begins with choosing the right providers.
“I have certain criteria that I need in a provider,” Sachs says. “And you have to decide as an individual what’s important to you.” Sachs looks for providers who have a certain level of experience, are flexible, and are willing to think outside of the box. She also needs doctors who value her input and consider care to be a team effort.
If you find that your current provider isn’t meeting your needs, don’t be afraid to find a new provider. “The stakes are high and a lot rests on this service,” Sachs says. “If this relationship and person are not working for you, you are well within your rights to walk away.”
Keep in mind, you may be limited in where you can go due to geography or available providers specializing in your condition. If that’s the case, Sachs suggests having a frank discussion with your provider about your needs.
Navigating Public Health Information While Living With a Rare Disease
Everyone needs to consider how public health information affects them as individuals. But when you live with a rare disease or several conditions, it can get complicated.
“There’s a level of constant uncertainty, especially in rare diseases. There may be less information and data available about rare conditions in comparison to what’s available for common diseases,” Sachs says. “Navigating your way through that forest of information and figuring out what path to take is a process.”
The process Sachs refers to involves doing some proactive research. You can start by learning how Gaucher disease affects your body’s organs and systems. Then you can better see how a piece of public health information relates to you. The best plan, according to Sachs, is to research and then consult your healthcare provider.
Evaluating Your Risk as a Person With Gaucher Disease
Having Gaucher disease is one part of your overall health. Seeing a Gaucher specialist is the best way to tailor your disease management to your unique health needs. Your Gaucher specialist can also help you understand public health information and how various health risks affect you personally. Evaluating your risk should be an ongoing discussion with your care team, especially as new information emerges.
As part of that discussion, make sure you talk to your provider about:
- Safe activities: When there is a public health risk, such as COVID-19, discuss how that risk affects you and your daily activity. Sachs recommends making a list of green light, yellow light, and red light activities based on the risk an activity poses for you. That way you’ll know what you can do, what you absolutely cannot do, and how to find your comfort level for those “yellow light” activities.
- Disease measurables: Your medical team can provide an overview of your disease based on data collected during labs and tests. Make sure you understand what those measurables mean, what they look like when you are stable, and when there’s cause for concern.
Covid-19 and Gaucher Disease
Research shows that having Gaucher disease does not make patients more likely to develop a severe case of COVID-19. And experts support COVID-19 vaccination for patients with Gaucher disease.
But like the rest of the population, people living with Gaucher disease still need to take precautions against the COVID-19 virus and its variants. Learn more about tips and information about COVID-19 specific to people with Gaucher disease.
How the National Gaucher Foundation Can Help
If you or a loved one lives with Gaucher disease, the National Gaucher Foundation is here for your family. We offer resources to optimize your health with Gaucher disease and connect you with the support you need.
- Internal Medicine Journal: No association of Gaucher disease with COVID-19-related outcomes: a nationwide cohort study — https://onlinelibrary.wiley.com/doi/10.1111/imj.15673
- National Library of Medicine: Experts’ views on COVID-19 vaccination and the impact of the pandemic on patients with Gaucher disease — https://pubmed.ncbi.nlm.nih.gov/34227097/
- Interview with Claire Sachs