In The Tennessean over the weekend a local, well known business owner commented on the Affordable Health Care Act.  He states: “This clearly is yet another hit by the government on small business, and this one slaps us right in the face. Not only will it impact our bottom line, it might even affect our ability to survive…”.  Survive, hmm, seems like a familiar concept.  We organ transplant recipients, and those waiting for one, know a little bit about fighting to survive.  Maybe not in business.  More in wondering if our lives will come to an end. Lives – business; business – lives.  People are given the title “hero” for saving a life.  Never heard that honor being given to someone who saved a business.

All of the negative talk about this heroic act has been about either business or politics.  I would like to add a few people notes into this conversation that have little or nothing to do with either.

Over the past six weeks that I’ve been back to work with hospice, I have watched two people die with liver failure.  When I visited with them, it was like watching a re-run on TV.  The jaundice, the weakness, the ascites and resulting grossly bloated abdomen, the wasting, and the pain.  I asked in both cases why neither had been considered for transplant.  In one case, the reply was “not with his insurance, no way he could have afforded it”. The second case was even more simple – he had no medical insurance.  Period. End of discussion. End of life.  I still find myself asking why I am lucky enough to be here, when others are not.  These musings are a value-based, ethical thought process nicely blended with thanksgiving for the grace of my donor and my God.  Could it be, however, not so deep? Am I thinking too hard?  Could it be only that I had the right kind of insurance?

Speaking of the right kind of insurance, I lost my job because of my illness.  That means I lost my insurance.  If it wasn’t for the fact that my wife was able to shift my coverage to her, I guess I would have faced the same fate of the people I knew under our hospice care.  Even with being able to move to Sandra’s insurance, a couple of years ago, without early implementation of some of the provisions of the Affordable Health Care Act, I could have been denied coverage because of my pre-existing condition.  Fortunately, I was protected.  That’s bad?  Then, after my transplant and becoming more and more healthy, Sandra’s job disappeared.  Without that same provision in this act that threatens the very survival of political careers and small businesses, there would be no way that I could afford just the monthly medicine costs, much less the monthly lab tests, and follow-up doctor visits. I don’t know that I would have survived.  But Sandra found her new job, and we are BOTH covered and can live our lives happily in Tennessee (Side comment – glad it’s no longer Florida; thanks John Romano: http://www.tampabay.com/news/politics/article1238156.ece).  And in doing so, we are supporting the economy – we bought a house, we both are working now, paying our taxes, and visiting these small businesses that are so fearful.  I am indeed biased, but is my being given coverage hurting our economy?

Speaking of pre-existing conditions, let’s not forget our future – our children and grandchildren.  The place for which I used to work, along with all the other facilities representing the Children’s Miracle Network, puts on a yearly telethon to raise money and awareness for these great places.  Wonderful stories are featured about neonates, the size of small puppies, being coaxed along to life.  We see the wonders of medical science and technology that allows children with sick hearts having them fixed or even getting new hearts to live reasonably normal lives.  Great and true stories. Oh, but wait.  In saving these kids lives, we really didn’t think about their future, did we?  Now these kids are becoming adults.  Some are developmentally delayed.  Some are ready to go to work.  We have new clinics for teenagers with cystic fibrosis transitioning into adulthood.  We have clinics for adults with congenital heart defects.  If we support a system that saves money by enabling insurers to deny coverage for pre-existing  where would these young adults be?  Where would our future be then?  I can tell you a lot of stories about these kids turned adults living productive lives contributing in all ways to our communities.  Do you really want to deny them the health care they need to maintain their lives?

If the answer to any of the paragraph ending questions is “yes”, then my donor, the donor of every living transplant recipient, and every child who is the product of amazing medical interventions over the past 30 years is being “slapped in the face”.  Everytime someone has an accident, gets diagnosed with a disease, faces the challenges of this economy with the impossible mountain of bills that uninsured health care means, they are being told by business concerns and politicians “your problem, not mine”.  To the small business owner quoted in the paper, I love your food, but the reality is that your fried green tomato BLT isn’t really very good for me – gotta watch the cholesterol you know.  And to the ice cream store owner on Facebook, your product is superb, but ice cream tends to cause me to gain weight. You are afraid that my health care costs are going to hurt your businesses, and you’re certainly not of the mind to help out your neighbors (another word for customers) who may not be as well of as you both in the physical and the financial senses.  Tell you what – I’ll make the sacrifice. I give up my trips to your stores – healthier for me anyway.

I guess survival is what it’s all about then, isn’t it?

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About the author

Dave Gerber
In May of 2010 I received a liver transplant. This was after 30 years of helping people with making very similiar and difficult decisions as to both receiving and donating an organ for transplantation. My experiences on both sides of the issue gives me a rather unique perspective and the personal and professional wisdom to help YOU AND YOUR FAMILY face this challenging, but hopeful journey.

3 Comments for Life As a Transplant Recipient – The Affordable Health Care Act

Catherine Malay

I agree with you on the pre-existing conditions clause. I worked in a hospital prior to transplant, I also lost my job. I had to pay for Cobra Insurnace which was all of my social security insurnace. I also covered my husband on my insurnace. So my problem was a bit different. We totally lost my income. We barely had enough money to purchase very little food and as everyone knows nutritional food costs more money. I did not qualify for and assistance we were $200.00 above the poverty level. We struggled but my surgery was paid for, and the hospital wiped out any co-pays that I owed. The doctors told my family they gave me to the end of the week to live if no match was found there was nothing else
they could do for me. I was in the hospital the last six weeks in and out of coma’s. Finally a match came in that Friday. It was not an exact size match it was to big, but the pushed it in there. I had my share of complications which I will not cover here. But the bottom line is I was very sick for a very long time even after the transplant. There was a law with Cobra you could only carry it for 18 months. In Delaware the state I live in you could not get on Medicaid unless you were on Social Security ofr Twenty Four months. I was only on Social Security Disability for 18 months that left me with a six month gap no insurance.
I coudl not take that risk of getting ill or having rejection set in and the drugs cost me $1000.00 a month with insurance we could not begin to imagine the cost without insurance. So I had no choice but to find a job. I had to take the first thing that came along and I had to make sure they offered Blue Cross and Blue Shield. I thank my god it did not take me long to find a job in another hospital close to my home but it was not in the area I was experienced in. I was a clerk in Medical Records. It was safe away form contact with patients but I could not adjust. Within three months I found another job working for the state of Delaware in the department of corrections and I am still here today. And doing well with Blue Cross and Blue Shield. I have not even tried to look for other employment for fear I would loose my coverage. I have adjusted to working in a prison but this was never my fist choice or anychoice for a career. I am just happy to be alive I got to see my son get married and I see my only grandson be born along with twelve years of other memorable things that I was there for.

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Dave Gerber

Catherine, thanks for your sharing of your story. Scarey, isn’t it? I’m glad for your twelve years and hope for many more for you. If people only realized that the ACA is not just politics and business – it’s people’s lives.

God Bless!

Dave

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Debora

I know that this is a little bit off the topic. I am asking desperately for help for my nephew. He had a liver transplant when he was just 5 months old. He is now 25 years old and I thank God every day for the years of life he has given him. When he was no longer being treated at Rainbow Babies Hospital the Insurance he had was taken away from him. He found a job and he had insurance, but soon they dropped his insurance. He has been without medication for three years. I have searched and called and have not been able to find help for him. Are there any resources available that can help me in finding the information that I need? Is there any agency, company, anyone that can help me to find what is needed for his health and well being?

Thank you!
Concerned Auntie

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