Financial Challenges Associated with Organ Transplants
Back in February I had the distinct pleasure of speaking to a group of people at The Gift of Life program in Philadelphia. The audience was made up of numerous organ transplant recipients and several organ donor family members. It was a very inspiring evening for me made all the more special because of old connections I was able to rekindle as well as being able support a good friend Jim who invited me to speak. What I learned that night as well as from my friendship with Jim is that the gift of life bears with it some unique lifelong financial challenges. And, as I got to thinking about these challenges in more depth, it hit me that for GLBT people who receive an organ transplant, the challenges can be compounded by the crazy fact that we don’t get the financial benefits that come with marriage.
As you may already know, you have to be pretty darn ill to get on the transplant list. The sheer amount of stress, fear, uncertainty, and patience that someone must deal with must be great. I certainly can’t speak to it personally. My friend Jim has written about his journey – before, during, and after his heart transplant over 12 years ago in his book “Gift From the Heart”. It is an eye-opening look into one person’s experience. I know personally it totally changed my heart with respect to being an organ donor and it opened my eyes to whole experience I previously knew nothing about.
What I want to touch base on however is the financial aspect of transplants and some statistics. It absolutely boggled my mind. No matter how savvy you are with your financial planning, these sorts of expenses and lifelong financial burdens can truly set you back.
First for the stats to give you a context of how many people we are talking about. About 95,000 people are currently on the US organ transplant waiting list, with 18 dying each day for lack of donated organs, and that list is constantly growing because of the success of transplants and the ageing of our population when people more often are getting sick to need an organ transplant.
That is a lot of people. If you take some random 10% figure, that means almost 10,000 of these people could by members of the GLBT community. The whole ability to have your partner be part of your medical process comes right to the forefront once again. After all, we all deserve to have those we love most support us through difficult times.
For further statistics you can visit the United Network for Organ Sharing website.
Let’s assume you are one of the fortunate ones on the waiting list and receive a transplant. Clearly there are significant emotional and personal implications and the recovery journey hasn’t even begun. The costs of a transplant are enough to stop your blood in its tracks. Consider that the typical heart transplant is about $250k, with meds costing a monthly $1500 for the rest of your life (other organs are somewhat similar, with kidneys the most common – approx 75% of all waiting patients are waiting for a kidney). That is a lot of money, but then again we all know that you can’t put a figure on the value of living your life.
For a more in-depth look at the cost of transplants, visit the Transplant Living website and “Financing a Transplant”.
There are more complications than just dollars and sense, however. Take the case of insured versus underinsured. This article from ABC News “Need an Organ? It Helps to Be Rich” points out a hard reality:
It’s the harsh reality of the organ transplant field: Patients who are uninsured or unable to pay are sometimes denied lifesaving treatment because hospitals can’t afford to foot the bill for the surgery or the extensive recovery.
In the article it goes on to talk about groups committed to helping the un or under-insured, but the reality is that even if someone handles the transplant bill itself, the ongoing cost to maintain health is staggering in itself. Think about it — how many of you reading this have a spare $1500 or more each month for the rest of your life to maintain the medication regimen required to stay well?
The complications don’t start there, however. Once someone recovers and rehabilitates from a transplant there are the questions of:
- how do I get back into the workforce?
- do I tell my employer that I am a transplant recipient?
- what health insurance will I be able to get?
For the GLBT community the complications compound because we are not often able to cover our partners on our health insurance. Not to mention, in many ways it is still legal to fire someone based on sexual orientation so do you really want to “come out” as an organ transplant recipient too? Many employers may just see the dollars and cents of the situation and decide maybe there is a better candidate (less potentially troublesome) for this open position. While most employers are not inclined to outright discrimination, we all know there are little loopholes, bouts of “manager discretion”, and other gray areas of wiggle room where it doesn’t pay to be the odd person out.
I am no expert by any means, but I hope I captured the main essence of what I’ve learned and offered you some things to consider and resources to explore. I did a Google search, but couldn’t find a single GLBT organ transplant related website or support group. My guess is they are probably out there, but unfortunately I can’t point you to any. If you or anyone you know is GLBT and has been affected by an organ transplant, please comment below. We’d love to run more information on this topic from someone with firsthand experience.
Meanwhile, consider giving the gift of life yourself and become an organ donor. For more information on becoming a donor check out this page on The Gift of Life website.
If you’ve got an inquiring mind like me and want more information on what an organ transplant is and how it works, check out this article on the “How Stuff Works” website.
Paula,
I was directed to your webpage by the same friend, Jim, to offer one perspective regarding transplantation. In my case, I needed a kidney transplant due a toxicity from a medication that I had received to treat an opportunistic infection (due to 24 years of living with HIV).
When you compound the cost of surgery and post surgical treatment on top of the already daunting cost of managing HIV, it is not difficult to understand the overwhelming obstacles one faces on even approaching the thought of tranplantation.
In our community this is not a rare occurance and with long term side effects from HIV meds, we will be seeing more of it in the years to come.
Luckily, I was blessed with an amazing set of circumstances and support that I found right within a subgroup of our culture – the leather community. It was by the grace of one leather brother who came forward as a living donor and an amazing leather sister who helped to direct me to the best organ procurement organization (OPO) and transplant clinic in the Philadelphia area (that would deal with HIV+ recipients), that I have survived.
I was fortunate to have a well structured insurance backing from my employer who recognized same sex partner relationships and a strong understanding of multi tiered insurance options after fighting to get myself off of disability years earlier. I already had Medicare in place due to my HIV which made adjusting to the second diagnosis of renal failure as a qualifying condition less stressful to manage. Still, there were moments when the long term results from a financial standpoint were questionable.
My partner and I went through all the legal preparation for securing medical power of attorney and living will (just in case) to ensure that there would be no third party difficulties. We are fortunate to have the full support of our families.
In order to keep my insurance in place, I did have to continue to work throughout the time that I was on dialysis waiting for the evaluation process to be completed. Once the surgery took place, I returned to work only two months after the procedure in order to guarantee that I would not lose any benefits (unfortunately my employer did not have short term disability coverage available). This was not only to support my recovery but maintain the stability of my health living with HIV as well.
Today I am 20 months past the surgery and still battling to smooth out coordination of benefits between insurance companies. Medicare D has been a curse and a blessing at the same time. Still, the gift of life has been a miracle and I cherish being able to continue to live life to the fullest.
In closing, I would recommend that anyone considering this option get prepared before health conditions become too severe. It is a consuming process but an option of Hope that guarantees that the light at the end of the tunnel is not a train.
Thanks for listening,
Jim/Tug