PostedOctober 18, 2021 · 4 minute read
Four members of the rare disease community describe their experiences with coordinated health care.
By Taylor Kane
A care team is a group of health care professionals who work collaboratively with each other and their patients to deliver the highest-quality care possible. Care teams combine medical professionals from multiple different disciplines, such as primary-care providers, nurses, specialists and mental health professionals.
The patient or caregiver is often the most important part of the care team, which can be both empowering and overwhelming. Having a strong ally on your care team who is advocating for you can ease some of the weight of coordinating care, or “quarterbacking” the team.
Unfortunately, not every patient has a dedicated care team. This can be especially likely if their disease is rare, their specialists are spread all over the country and their medical records are isolated in different facilities. For many people, coordinated care is hard to come by. This year, the United Kingdom identified care coordination as one of the major problems facing the rare disease community.
The accessibility of care teams can also be compounded by factors that make it more difficult to access quality and coordinated care, such as socio-economic status and race. Care teams can also be influenced by the size and strength of a specific rare disease patient community, and how much research has previously been done in that space. Below, four members from the rare disease community, both patients and caregivers, share a variety of experiences with care teams.
When you have myasthenia gravis, it is common you have additional autoimmune conditions, so you end up seeing other specialists. When this happens, they are often unwilling to communicate or have conflicting opinions. I don’t feel like there’s an actual care team in place unless you’re going to doctors in the same network. There’s no portal or procedure on how medical information and records will be shared. It’s absolutely frustrating.
One of my doctors that needs more recognition is my primary-care physician. She has so much on her shoulders. She was competent enough to refer me to a specialist who has years of experience and specifically studied my unique condition. She saved my life by listening to me and by putting her ego aside. When you have a rare disease, a good doctor will tell you they didn’t study your disease. Mine has looked things up to find the right doctor to help me, and is quick to write a referral. She really goes above and beyond.
Our therapy team doesn’t get nearly enough recognition as they deserve. They give a lot of the hands-on stuff where you actually see the improvement. Something as simple as rolling over, they tell you “try this,” and you do it a couple times and now he’s rolling over. They have been trying to get him to make sounds. Right now, he has no words but there’s a continuous effort toward sound. Now, he has a squeal that he didn’t have before!
When he was diagnosed, we were first with a great immunologist in New York, but we realized with a rare disease you need to find the best experts. His care team started expanding and he had an immunologist and transplant team in Seattle. His care team is a multidisciplinary group that all have an expertise in Idan, my son.
We went to Seattle for his first transplant and rented an apartment for 9 months. His first transplant failed, so we came back for his second transplant and stayed for 6 months. The team we chose in Seattle was open to taking advice from other doctors we trusted.
We looked for personalities that are willing to work with others and take feedback. When Idan was diagnosed, we visited eight different transplant centers across the country to make sure we were making the best choice.
I have a rare disease and so does my son. My rare disease does not have care teams like my son’s disease. My son Jack has cystic fibrosis, and with the help of the Cystic Fibrosis Foundation they’ve developed cystic fibrosis clinics. We go there for his care and in one day we see his pulmonologist, nutritionist, pharmacist, physical therapist, respiratory therapist, social worker and mental health provider. For me, I go to multiple different doctors in multiple different facilities that don’t all have the same medical records program or communication with each other. I am constantly in a battle to find the care that I need.
The model that I am in with Behcet’s disease is the standard in American health care — multiple different specialists and facilities. My disease is so rare that every doctor I’ve ever met has said I’m the only person with this disease they’ve come face-to-face with.
On any given day when I’m sick, I have to figure out which of my specialists to call to figure out what the right thing to do is.