- My brother was diagnosed with an incurable liver disease in 2016 and required an organ transplant.
- He was without health insurance, and through my advocacy, he secured a transplant in 2018.
My brother was diagnosed with primary sclerosing cholangitis — a liver disease — resulting from the autoimmune condition ulcerative colitis in 2016. The condition is incurable and progresses to liver failure without a liver transplant. Fortunately, he was transplanted on July 8, 2018, and has been doing well ever since.
However, the process of getting him a transplant was a challenge, and quite eye-opening. I thought I'd watched enough medical dramas to give me a basic understanding — but, of course, it's nowhere as simple in real life as it appears on television.
My brother's diagnosis is rare. Though the exact incidence and prevalence are unknown, it is estimated that about one in every 10,000 people has the condition. Witnessing his health deteriorate was extremely difficult, but during the time between his initial diagnosis and his surgery I learned to navigate the organ-transplant world so I could be his advocate.
His initial diagnosis and an experimental drug trial
My brother was initially diagnosed at a county hospital in Brooklyn, New York. The specialist at the county hospital recommended seeing liver specialists at Mount Sinai Hospital's Recanati/Miller Transplantation Institute, where he ended up having his transplant.
What was left unsaid is that he would never get there without funding; he had no health insurance, and our family was lower middle class.
I made an outpatient appointment for him to see a gastroenterologist associated with Mount Sinai. I just wanted to get a foot in the door, and we paid out of pocket. Since transplantation was the ultimate goal and his health started deteriorating rapidly in the three months after his diagnosis, he was placed in a drug trial at the hospital.
He had an adverse reaction to the drugs in the trial, but that was a blessing in disguise. The supervising doctor of the drug trial was also the director of the transplant unit. Having the director as an advocate proved to be a huge help; because he had personally met and treated my brother, he was able to closely evaluate his suitability for a transplant.
How my advocacy led to my brother's transplant
Because of my brother's lack of insurance and the exorbitant out-of-pocket cost of such a procedure, we knew we'd need to get funding from another source to pay for his transplant surgery. The only thing that changed from the time of diagnosis to his transplant, other than his decline in health, was the level of advocacy he was receiving as I stood by his side.
My extensive research of his condition gave me the foundation needed to ask the right questions. I questioned why the doctors were prescribing specific medications and performing certain procedures based on results of previous lab work and procedures. Doctors stopped giving me canned responses and eventually included me when developing treatment plans.
This vigorous advocacy resulted in medical providers and social workers helping us navigate the health-insurance landscape and pulling every lever in our favor, which secured him a spot on the donor list. But not every patient has an advocate as present as I was, and getting on the donor list isn't a straightforward process.
Receiving a liver transplant has many barriers — and even more for people of color
Liver transplants have generally high success rates, but only about 9,000 transplants are done nationwide per year. Because there is fierce competition for these organs, having an informed and proactive advocate is important.
Organ transplantation doesn't happen as quickly or easily as you see in television or movies. Getting on the organ-donor list can take long enough, and once you have a spot, it can be a while before you're matched. Organ Procurement Organizations have policies governing organ donation, including many intended to level the playing field, though they're still far from perfect.
A couple of big hurdles are affordability and meeting the criteria for being placed on the donor list. Needing an organ doesn't automatically qualify you; you have to prove you can pay for not just the transplant surgery but the necessary medical care afterward.
Additionally, because organ transplantation is such a huge procedure, having support during recovery is a key determining factor. Medical professionals will often say it's one thing to be able to afford the surgery and make it through the initial transplant, but they won't give it to someone they don't believe will be able to take care of themselves afterward.
Racial inequity also plays a major role. In addition to social determinants of health, race and genetics affect a person's ability to receive an organ transplant. Because of health and racial disparities, Black people have higher rates of chronic diseases like diabetes and high blood pressure — conditions known to increase the risk of organ failure.
A lack of donors within the Black community is an issue that really struck me while going through this process. Though race isn't the primary determinant in organ matching, having a donor and a recipient of the same race increases the chance that the organ is a match and decreases the likelihood of rejection.
However, though Black people make up 28.5% of the waiting list, they accounted for only 12.9% of organ donors in 2020. Barriers to donation can include a lack of awareness of transplantation, religious or cultural distrust of the medical community, fear of medical abandonment, and fear of racism.
We now know that social determinants of health and medical providers' implicit bias can preclude comprehensive conversations with people of color about their health, making it more difficult to make informed healthcare decisions. This was true in our case — no one offered any information to me about specific ways to help my brother. It was up to me to excavate all the necessary information so that I could advocate for him and save his life.
I learned a lot about the importance of health literacy, navigating a tricky health-insurance system, access to preventive screening, and what it means to become a living donor, which is when a living person donates an organ or a part of an organ for transplantation in another person. I wasn't a donor before my brother got transplanted. I'd thought about organ donation only when it would be featured on the occasional "Grey's Anatomy" episode, but it was never my reality. Now my entire family and I are registered donors.
My brother reached his four-year mark post-transplant on July 8. We celebrate this as his new birthday. He has had no complications related to the transplant and is now in peak health, back at work and living his best life. It is a joy for us to take our kids to water parks in the summer together; before his transplant, simple activities like going to the mall or wrestling with his sons were impossible. I still marvel at how much better his quality of life is now compared with four years ago, and I am forever grateful that he beat the odds.