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Author Topic: Transplants for HIV positive patients ?  (Read 1300 times)

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Offline J.R.E.

  • Member
  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
Transplants for HIV positive patients ?
« on: September 17, 2007, 07:21:28 AM »
Transplants For HIV Positive Patients?
Article Date: 16 Sep 2007 - 0:00 PDT

http://www.medicalnewstoday.com/articles/82639.php

 
Not long ago, organ transplantation was not considered an option for HIV infected patients. However, in recent years, new clinical approaches have led to good outcomes in the growing number of HIV positive patients who need kidney and liver transplants. Recent developments in organ transplantation for patients with HIV are summarized in the September 15, 2007, issue of Transplantation, the official journal of The Transplantation Society and published by Lippincott Williams & Wilkins, a part of Wolters Kluwer Health, leading global provider of healthcare content, context and consulting.

"The blanket exclusion of HIV infected patients can no longer be justified based on the early results demonstrating the safety and efficacy of transplantation in this group of patients," write Drs. Peter G. Stock and Michelle E. Roland of University of California, San Francisco, (UCSF) in the September issue of the Transplantation journal.

Modern treatments especially the anti HIV drug combinations known as highly active antiretroviral therapy (HAART) have greatly decreased the risk of death from AIDS and other causes in patients with HIV. However, as they live longer, patients are at risk of other HIV related complications, including kidney and liver disease related to hepatitis B and C infection. The HAART drugs can also have toxic effects on the liver, compounding the damage caused by hepatitis.

Drs. Stock and Roland cite progress in several key areas including the ability to control HIV infection using HAART and improved measures to prevent opportunistic infections that have made organ transplantation an increasingly viable option for HIV positive patients. Studies performed in the "post-HAART" era at UCSF and elsewhere have shown promising results. In one study of liver transplantation in HIV positive patients, the 3 year survival rate was 73 percent similar to that of HIV negative patients.

At transplant centers worldwide, criteria for considering transplantation in HIV positive patients are "slowly being liberalized," according to the authors. In most cases, patients must have "undetectable" HIV levels before kidney transplantation can be considered. Exceptions may be made for patients with liver damage related to HAART drugs.

At first it was thought that, because of their weakened immune systems, HIV positive patients would need less immunosuppressant therapy to prevent transplant rejection. However, early experience has suggested that rejection rates may be higher in HIV positive patients, especially early after kidney transplantation. There is also evidence that some of the immunosuppressant drugs given after transplantation also have antiretroviral (anti-HIV) effects.

More research will be needed to understand the complex interactions between HAART and immunosuppressant drugs, and to develop specific immunosuppressant strategies for HIV positive patients. So far, there is no evidence that the risk of progression to AIDS is increased after organ transplantation.

Further progress is needed in these and other key areas. Meanwhile, the concept of organ transplantation for HIV positive patients is increasingly accepted by insurers and policymakers in the United States and elsewhere. "It is imperative that HIV positive patients, HIV health care providers, and the transplant community are aware that transplant is a viable option for the HIV infected patient," Drs. Stock and Roland conclude.

About Transplantation: The Official Journal of The Transplantation Society

The most cited and influential journal in the field (with over 20,000 citations a year), Transplantation (http://www.transplantjournal.com), a Lippincott Williams & Wilkins journal, is published twice monthly and provides extensive coverage of the most important advances in transplantation. Consistently ranked among the top journals in transplantation, surgery and immunology, the journal covers areas including cell therapy and islet transplantation, clinical transplantation, experimental transplantation, immunobiology and genomics, and xenotransplantation.

About Lippincott Williams & Wilkins

Lippincott Williams & Wilkins (http://www.LWW.com) is a leading international publisher for healthcare professionals and students with nearly 300 periodicals and 1,500 books in more than 100 disciplines publishing under the LWW brand, as well as content-based sites and online corporate and customer services. LWW is part of Wolters Kluwer Health, a leading provider of information for professionals and students in medicine, nursing, allied health, pharmacy and the pharmaceutical industry. Wolters Kluwer Health is a division of Wolters Kluwer, a leading global information services and publishing company with annual revenues (2006) of Ä3.7 billion and approximately 19,900 employees worldwide.



Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 23,859
Re: Transplants for HIV positive patients ?
« Reply #1 on: September 17, 2007, 08:39:46 AM »
This is good news and hopefully another barrier changing if not totally ending in prejudicial treatment of patients living with HIV.

Author and activist Larry Kramer is alive today because of having had a liver transplant over 5 years ago. I've known Larry for over 20 years and he's never been healthier or happier than he is now. Without that transplant he wouldn't be here today.


Andy Velez

Offline wishihadacat

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  • Posts: 220
    • Therainstorm.com
Re: Transplants for HIV positive patients ?
« Reply #2 on: September 17, 2007, 02:27:19 PM »

Heck! you mean I might have to live another 20 years with this f**king virus? 

That is good news, and thanks for posting it.

I can picture my poz personals ad in 20 years:" 76 year old male, still hoping to get lucky."


Your name here  X_______________

Offline newbernswiss

  • Member
  • Posts: 260
Re: Transplants for HIV positive patients ?
« Reply #3 on: September 17, 2007, 02:51:39 PM »
Just FYI, LifeLink in Tampa, one of the larger organ transplant coordinators in Florida DO NOT offer HIV+ persons organ transplant options at this time. I spoke to one of the transplant coordinators at LifeLink and she said some of the other facilities do offer organ transplants in Florida. So it's a matter of asking who and where you can have the options.

Offline J.R.E.

  • Member
  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
Re: Transplants for HIV positive patients ?
« Reply #4 on: September 17, 2007, 07:44:14 PM »


Author and activist Larry Kramer is alive today because of having had a liver transplant over 5 years ago. I've known Larry for over 20 years and he's never been healthier or happier than he is now. Without that transplant he wouldn't be here today.




Also found these two articles Written By Larry Kramer :


http://www.hivandhepatitis.com/hiv_hbv_co_inf/102102a_print.htm



Larry Kramer Speaks Out on Organ Transplant Issues

By Larry Kramer
Larry Kramer is a playwright, novelist, cofounder of the Gay Menís Health Crisis in New York, and founder of ACT-UP. Due to complications related to Larryís coinfection with HIV/HBV, it became necessary for him to undergo a liver transplant last year. At 66, he is the oldest person transplanted with a new liver. In the following two short essays, he speaks about some of the critically important issues facing people who need organ transplants, most of whom die waiting to receive them.

 We Must Have Presumed Consent
 My New Liver

 


We Must Have Presumed Consent
More and more people with HIV coinfected with hepatitis B or hepatitis C are going to need organ transplants, particularly liver transplants. This is not an opinion. This is a fact.

As more and more of us all over the world discover we are carrying one or more of these viruses, even if we are being treated for them -- or particularly if we are being treated for them -- the more likely it becomes that one of our organs is going to cease working effectively. And the longer we are being treated, i.e., the longer we live, the more that chance grows.

With all the new drugs for HIV and viral hepatitis, it is now safe, ok, kosher to transplant "coinfecteds," which is what people with viruses are called in the transplant world. The New England Journal of Medicine has even written approvingly of such transplants. Insurance companies can no longer simply refuse to pay for these hugely expensive procedures on the grounds that they are "experimental." These operations are no longer experimental--too many of them have been done successfully.

Right now there are hundreds of thousands of people in this country waiting for organs. Most of them will die before they get them. Many of them will die after they have been put on a waiting list.

Why is this?

Because not enough people in America donate their organs to be used after they die.

It is as simple and as complicated at that. There are more than five people waiting for every organ made available by donation.

In many foreign countries this extreme shortage does not exist. That is because these countries (and they include Austria, Belgium, Denmark, Finland, France, Italy, Norway, Singapore, and Spain) have what is called a Presumed Consent organ collection system.

That means that every person in that country is deemed to be an organ donor unless s/he specifically opts out. That means that when an accident occurs to a person who has not opted out, and brain death is declared, his or her organs can be taken immediately without the time-wasting rigmarole America requires for "approval." An organ only has a few hours to get from one body to the new one. In America you sign the back of your driverís license if you are willing to be a donor, and even then most centers still require permission from a family member, which, believe it or not, may not be given.

I have been trying, since my transplant, to find a way of changing Americaís organ donor system to one of Presumed Consent. Well, you would have thought that Presumed Consent was akin to the biggest blasphemy known to civilization. Opponents from the right, the conservatives, the orthodox, you name it, including, believe it or not, the ACLU (did you know that the organs of dead people have rights?) have screamed in opposition. These opponents do not care that Spain, a very Catholic country, has the most successful organ procurement system in the world.

And no one I can find knows how the system can be legally changed. Who does it? Congress, by passing a law? HHS, by issuing an edict? State by state or community by community, by putting it on a local ballot? As Robert Bazell, the chief medical correspondent for NBC Nightly News, warned me when I embarked upon this new activist journey, "Larry, you will find that it is like punching air."

The one person who can help change this system more than anyone else is Senator Bill Frist (R-TN). He is a transplant surgeon himself. He knows the hideous horrors of watching people desperate for organs die. But he is a politician, and a Republican, and from the South, so he is not exactly willing to be Mr. Flag Waver for organ transplants.

He has prepared a bill, with Sen. Christopher Dodd (D-CT), to investigate Presumed Consent. But this bill has no hope in hell of getting passed, which is not so bad because it is such a wishy-washy, namby-pamby piece of stand-in-place legislation that we are better off without it. It is an all-talk no action-kind of bill, akin to all those Presidential Commission Reports Reagan and Clinton ordered to stall for time when they really didnít want to do anything for AIDS but wanted to look like they were.

AIDS activists have been here before. It is the beginning of a new crisis and no one of any importance wants to pay it an iota of attention.

In the coming years the number of people around the world waiting for new organs is going to rise to the millions from the several hundred thousand currently in need. Once again I find myself screaming out loud about a huge and coming catastrophe and find that no one is listening.

I would like to close with some words from Dr. John Fung, who saved my life:

"Patients are dying and the public still does not understand that saying no to donation means someone will die. No one wants to be so blunt. No one wants to raise the American conscience to make people feel that it is their human obligation to pass along their body to the living when they die. This is a systematic deficiency in American culture, the idea that you are out only for yourself and have little or no obligation to society as a whole."

Tell Senator Bill Frist:  America must have presumed consent! E-mail him and tell  everyone you know to email him or call his office:

 
Bill_Frist@frist.senate.gov or call 202-224-3344.
My New Liver
It is very, very hard to obtain an organ transplant in the United States.

First, there are so few organs available.

Second, it is hard to locate a transplant center willing to do coinfecteds ó thatís what they call you when you have a virus like HIV with hepatitis B or C. 

Third, if and when they accept you, you have to wait in line. Depending on which part of the country you are applying from, and which medical center, it takes varying amounts of waiting time. It never happens quickly. There is far too much red tape and bureaucracy for that.

Fourth, and perhaps first, you have to do an awful lot of investigation, research, phoning, faxing, e-mailing, pestering, even (how shall I put it?) raising your voice politely, of course) to accomplish any of this.

Patient empowerment takes on new meaning. You have to become a very fervent activist, for yourself. If you arenít feeling so hot, then you need someone with persistent and unflagging energy to do it for you. You need such a person even if you are feeling great.

A transplant is something you simply cannot enter into on your own. In fact, no transplant center will accept you if you cannot show that your support system is visible and strong.

But if you know you are going to die if you donít get a new organ, as was my case, youíd be surprised what a motivation this can be. I was given six months left to live and was down to the wire when I finally got the call.  At 66 I was the oldest person thus far transplanted with a new liver.

My surgeon says in all seriousness that you are as old as your liver. I now have the liver of a 45-year-old man. Each day I feel vital and vibrant. I have no side effects. My hepatitis B appears to be gone from my body. And I truly feel like I am 45 again. Everything I went through was worth it, tremendously so.

You must investigate the half-dozen or so medical centers (the number is growing) that will take us. You must never stop your efforts to a) make a transplant surgeon evaluate you and b) get one to accept you. Many people apply to several different centers, but that can be very expensive.

There are a lot of evaluation testing costs you must bear before you can be officially accepted, and which your insurance, if you have any, picks up only if and when you are accepted for a transplant. 

I was lucky. There happened to be a spurt of interest in transplanting coinfecteds when I applied. It helps to be a scientific curiosity. I believe I was the 22nd coinfected to be transplanted. The NIH is currently preparing a research protocol to study transplants for conifecteds; one of these days it will be approved and you might qualify for that.

When you finally find someone willing to accept you, you have to figure out how to pay for your transplant. No medical center will take you unless you can prove up front that you can pay.

Not long ago if you were coinfected and looking for a new liver, you would have been turned down by your insurance company because saving your life was considered experimental. Thatís changed because of heroic surgeons like Dr. John Fung at the University of Pittsburgh Medical Center who knew better and proved it and confronted the insurers himself.

Still, insurance companies usually have to be challenged if they turn you down, which on the first go-round they usually always automatically do, hoping you will not appeal.

Medicare rejected me the first time but we appealed and in one day they had reversed their decision. Empire Blue Cross, my secondary insurer, accepted me immediately.

My liver transplant has cost Medicare, so far, over $500,000 and Empire Blue Cross, so far, over $100,000 for the continuing medications I must take, including a monthly pop of some $10,000 for something called Hepatitis B Immune Globulin, which I believe I must receive for the rest of my life. And you need to get your blood tested every few weeks. That costs a lot too.

So we are not talking about an easy or inexpensive ride here. The easiest part, believe it or not, was the transplant itself. I wasnít in any pain, ever.

The recuperation period is long; getting your wind and motor abilities back can require many months of physical rehab and taking it easy. You must have patience, which I donít. Months of not doing anything can verge on the depressing. And if you donít live near a transplant center, you may have to move close by for the months of the whole process.

My lover and care partner (two different people, and I couldnít have got through the process without either one of them) lived with me in Pittsburgh for many months. I needed the love of my partner, David Webster, every single minute. Boy did I need it. This is lonely and cosmically metaphysical stuff to live through. (One day they tell you youíre going to die, and then suddenly you donít.)

Hugs and kisses and smiles and homemade food and constant gentle urgings that "you can do it" sure help you get better faster. And I was not an easy patient. I know that.

And I needed the bossy efficiency of my very own Nurse Ratchett, Rodger McFarlane, who had every secretary, nurse, technician, and doctor at Presbyterian Hospital extra-attentive to his patientís case.

I was lucky to discover, in all my research, Dr. John Fung and his remarkable team at the Thomas E. Starzl Transplantation Institute of the University of Pittsburgh Medical Center. I had never heard of him, or them, and they had never heard of me, and it was because of our always remarkable AIDS activist network and particularly our fellow warrior Jeff Getty that I became acquainted with the surgeon widely accepted as the best liver transplant surgeon in the world. Did you know that the liver transplant was actually discovered at Pittsburgh?

I was additionally lucky because I was able to meet the criteria for acceptance last year. I donít think I would have qualified under new guidelines, called MELD (Model for End Stage Liver Disease), which came into effect at the beginning of this year.

These new guidelines were developed by the Mayo Clinic, and consciously or unconsciously, MELD criteria appear to be blatantly discriminatory against coinfecteds. As I understand them, and very little about the current or past organ allocation system is understandable (even by the doctors who get the organs), the abnormal blood markers they look for to be considered for acceptance are not ones that people with HIV typically have out of whack.

For instance, my PTT, bilirubin, and creatinine were not greatly elevated. But I was still dying and my liver was still conking out. Yes, you say "go figure" a lot in this whole process. And figure you doÖ or else you die.

Alas, most people in need of new organs donít make it. My memory is filled with haunting images of desperately sick people in the UPMC clinic waiting room hoping for a chance to grab an arriving surgeonís arm and literally beg him or her for a liver. And of the stories of uninsured recipients telling me how everyone in their entire family or indeed community or indeed town had sold everything they could to pay for their chance at life.

It shouldnít be like this, of course. We know all that. It is not right to have a system that excludes most of the people who desperately need its services. Yes, I know that I have been very, very lucky. I can shout "Persistence!" to the world, but all activists have learned the hard way: we donít get anything without a terrible fight. If we want to live, we must fight like hell. And the fighting must never stop.

10/21/02

Source
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Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline J.R.E.

  • Member
  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
Re: Transplants for HIV positive patients ?
« Reply #5 on: September 17, 2007, 07:50:56 PM »
Just FYI, LifeLink in Tampa, one of the larger organ transplant coordinators in Florida DO NOT offer HIV+ persons organ transplant options at this time. I spoke to one of the transplant coordinators at LifeLink and she said some of the other facilities do offer organ transplants in Florida. So it's a matter of asking who and where you can have the options.
Newber ;

Thanks for that info also.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

 


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