Can This Be True?

[nygirl7]

My bosses wife was asking me about treatment for someone they know. She says that they will not transplant him because he is gay - the insurance company is refusing for that reason.

I just cannot find it in me to believe such a thing could be possible in this day and age.  I said perhaps it was because the person wasn't sober - then it could be a real reason but I just can't believe that they would deny someone on their sexual preference.

I've never seen this asked before so I thought I'd see if anyone knows so I could respond with something better than 'that doesn't seem right'.

Deb

[susan400]

FlGuy, you crack me up!  I just now read your comment up above.  It's so true.  Almost EVERYBODY down here in FL is a transplant.  There are very few of us true Southern Florida Crackers down here.  I myself am a  Florida Crackers.  Born and bred southerner.  I've been in FL since I was 2 wks old and my parents moved me here from Alabama.  The South is all I know!  Incidentally, FL has some very reputable transplant teams here.  University of Miami, Shands, Mayo.... and probably many others...     There has to be another reason why this guy was passed over besides his sexual orientation.  Susan400

[mikesimon]

A friend was transplanted in 2000. He was HCV positive (type 2) and on methadone for a previous heroin addiction. I haven't spoken to him in a couple of years but when I did he was HCV SVR and still on methadone. And he didn't have insurance either.
Mike

[rexx73]

well i am off any kind of street drugs for about 12 years.

and i hope i never hace to become a transplant,bur with f3 you start thinking about diffrent things.
i live in europe(switzerland) and i never was told to get off the methadone,
some poeple get off methadone and later they fall back in heroin abuse.so i think better stay on methadione ,than fall back in illegal substance addiction.

[merryBe]

trish, thank you, and that was my point. There are a few TP centers considering HIV patients now, because anti-rejections drugs are not so harsh, but only a few and it's due to all their other issues and what that does to their long term survival rates.
Let's put it this way, two people are laying side by side, same MELD, similar age both a match for a liver, one has HIV one does not...who will the doc pick for the transplant?

It's important to get this concept because it means we need to encourage even MORE than normally those with HIV to seek chemotherapies. This is their most realistic chance of getting well. I think to expect to get a TP for most of them is unrealistic, unless you are Steve Jobs or someone able to donate millions to a hospital it's just not likely to happen any time soon.

rex--I'm not sure that methadone automatically disqualifies you, but it sure doesn't help. If you were put on it for medical reasons such as a severe spinal injury or something it would not disqualify you, but if you are in a maintainance program for addicts I think it would depend on the TP center and how long you had been in the program etc.  I don't think they are looking to TP people who have only recently gotten into treatment and off street drugs because the risk of re-addiction and ergo re-infection are quite high, but if you have been in a program for years and not used other drugs then there might be room for consideration.
I would definitely talk to your doctor about it and find out what the criteria are.
There are quite a few things we can change that can improve our chances for transplant. Getting blood sugar under control, loosing weight, getting off unnessessary meds are among them. Also, if you were to voluntarily cut back and finally get off the methadone it would show your doctor how serious you are about regaining and maintaining your health, and this will go quite a ways towards getting a recommendation for transplant. Remember part of the process is the doctor must approve you as a candidate for transplant.

[rexx73]

what about transplant while on methadone treatment?

are people on methadone excluded from liver transpalnt?

[mj6000]

merryBe & all, thanks for your responses,I was focusing too much on the treatment side of the issue. I'm not very familiar with the transplant side of the issue so I appreciate the information from everyone.

[Trish77]

From an NYU medical blog - peer reviewed article:

http://www.clinicalcorrelations.org/?p=1703

"In the past, HIV was considered an absolute contraindication to liver transplant due to the infecteds’ overall poor prognosis and their inability to continue immunosuppressive therapy post transplant. The winds have now shifted and liver transplantation is now considered possible in this population. However, only 26 centers in the United States consider HIV-positive patients for liver transplant."

"In addition to the traditional criteria used for transplant eligibility, HIV patients have  stricter inclusion criteria for consideration and enrollment. Some of the prominent criteria that have been utilized in previous studies are included  below.

Inclusion Criteria:
Life expectancy greater than 5 years
CD4 cell count greater than 200 for over 6 months pre-transplant
Adherence to stable HAART regimen
Absence of any AIDS defining illness
Plasma viral load less than 50 copies/ml

Exclusion Criteria:
Presence of any cancer diagnosis
Any untreated chronic illness (included tuberculosis)
Greater than 3 classes of viral resistance
Persistent HIV viremia
Any non-compliance with HAART

To conclude, with careful and stringent selection criteria, HIV-infected patients may be considered for liver transplantation. They appear to have similar short-term survival post-transplant as do HIV-uninfected patients, although more studies are needed to evaluate their long-term prognosis."

[merryBe]

mj6000, well first, congratlations!!  I'm really glad you made it through the process successfully, and you are correct many co-infected people make it through the chemo therapy treatment just fine, thank God.

But that's not what we are discussing, we are discussing transplant. In this case what child24angel said does apply. That over time the liklihood of the immunosuppressants causing the HIV to progress more rapidly go up. Way up.

If you have HIV than you have to be familiar with the concepts. Before the advent of current SOC for HIV the average length for AIDS patients was extremely short.
I know, because I lost 2 dear friends to it. They were both dead within 2 years of diagnosis.
Minus the immne system boosters now available, AIDS was far more tragic and fatal than it is today. That said, it is counter intuitive to expect someone with Aquired Immune Deficiency Syndrome to maintain good health with immuno-suppressants on board.
While it is true they are working furiously on better anti-rejection drugs that don't play such havoc with white counts etc. it is equally true that to date there is no optimal way to suppress rejection without suppressing the immune system which is the last thing an HIV person needs as this is what causes all the other opportunistic infections to succeed.  The only current way around this conundrum is to get an absolute match as a donor, but unless one has a twin that is highly unlikely.

The sad but true statistics prove that docs already know these outcomes, and though most don't tell us the whole truth it none the less is known. They don't all tell us that we probably won't get a transplant beyond a certain age either, or with certain other diseases. Yet while reading the stats just the other day I noticed that only 6% of people on medicare get transplants. Same with certain oter diseases. Are these coincidences or is there some selection going on...you decide.
The 6% medicare....Is that economic or age related? Answer: both, but don't expect docs to admit it.  Nevertheless, they are looking in transplant cases for those most likely to survive and most able to pay, and as there are not enough livers to go around, selection is involved.

Less than half the people needing a liver will ever get one.
So if you had one liver come in, and had to choose between a younger healthier otherwise patient, and one with all kinds of things that lessen their chances of a good outcome, which would you choose to give the liver to?
That's my only point, that is what is done, whether it's admitted to or not.
I'm just being a realist here.  It would be nice to know this guys labs stats and verbatim what the doctor actually said wouldn't it!!

There are some signs that dialing down anti-rejection drugs is changing this landscape, I'm sure Mike could comment on this. It would be lovely to see things change in this regard.

as far as 20th century goes Bill, I spent the last 30 years with a dear friend and neighbor who had 3 transplants and researched anti-rejection drugs for her, she finally got on the right meds, not the ones her TP center had her on, but the ones Mike is on....and did much better....but alas it was too late...the years on the wrong drugs took her immune system down and we lost her last year.
You one quotation is talking about short term prognosis, but I am referring long term outcomes and long term the outcomes are not as good. If it were a perfect world and we could completely replace the weakened immune system they might be, but that's not the current state of our science. If short term were a valid yardstick, then anyone surviving the actual transplant would be an entire success, but survival rates being factored in that landscape does change.
O'gRADY,?? not sure on what he bases this opinion. Look, if I have a patient who succoumb to carcinomas after TP I can attribute that to his HIV/immuno suppressant landscape or not, and just say he died of cancer. Did his treatment produce the cancer is the question. If I want to suggest it does not then I guess I'd be within my rights, since there's no "absolute proof" that A followed B.  On the other hand, a healthy immune system roots out free radicals and destroys aberant cells, by the thousands each day...whereas a compromised immune system cannot keep up and cancer often follows. I could literally pull up thousands of studies to confirm this medical point of view, but why. It is self effident and common knowledge now. We do know the mechanism that turn cells cancerous. To suggest immunosuppression is not one of the causes is simply ludicrous, IMHO.

It's also true that doctors do factor in behaviors when deciding whom to recommend for treatments. The fellow that runs the biggest AIDS clinic in the NW told me one horror story that would convince all that this is a valid concept as well. They treat those likely to succeed, those who can handle the strain on health of both transplant and retreatment with chemo,  those likely to take their meds, and those likely not to harm themselves or others. The criteria is extensive but I'm inclined to think it wisdom. If one does not take care of oneself after transplant then that organ will fail, and someone else, who might have lived another 10 or 20 years won't because it went to the irresponsible. That's not right either.

For instance, should one be disqualified for TP because they will not take their mental health meds...? On the surface one might say no, but non-compliance with things one doesn't like means the liklihood that person will be faithful in meds and check ups after TP go down considerably. So would that person get a recommendation?  You see where I'm going. All these things play in to a doctor saying he won't recommend transplant. They are looking for the cases most likely to succeed and go on to have many more healthy years. Were I in their shoes, I'm sure I'd do the same. Decisions not to be envied, to be sure, but needful none the less.

mb

[child24angel]

At the TP center where my son went, they said
they would not do a Liver TP on co-infected people:(

My brother went to the same center and was co-infected with
full blown aids and was not eligible for TP in 98.
They would not get pass the first interview.
Maybe this has changed in the last few years.
I also think it depends on the TP center and state.

I would think that with HCV and HIV infected patients on immunosuppressants after TP would be counterproductive?

I've not read up much on this to date.  Interesting.

Hugs
Elaine

[Trish77]

" am HIV positive and my immune system is just fine. I just finished my treatment and have just had my 6 week post PCR test indicating I am still UND. Coinfection is in no way a reason not to treat. You only need to have your HIV viral load UND. There thousands upon thousands of coinfected people who treat and become UND. "

"Now if a coinfected person with HIV & HepC had progressed to full blown aids and the HIV meds were not working they would not be eligible for treatment or transplant. "

That would be my guess as to what the missing piece of the puzzle is.  That it's not because he's gay at all but because his CD4 count has dropped below the marker where HIV becomes AIDS and that his being gay has absolutely NOTHING to do with this, he just happens to BE gay and that's how she's reading it.

That would be my guess as to possibilities here.

[mj6000]

Now if a coinfected person with HIV & HepC had progressed to full blown aids and the HIV meds were not working they would not be eligible for treatment or transplant.

[mikesimon]

Post liver transplant the short term mortality of HCV mono-infected and HCV/HIV co-infected is similar but, the co-infected numbers become increasingly worse over time - in the mid and long term. I would guess that most transplant centers would conduct their programs with this in mind and as a result the co-infected would likely have a significantly harder time getting an organ.
Mike

[nygirl7]

I know of several coinfected people who are in here right now doing just fine so that just can't be it.  Some piece of the puzzle must be missing somewhere.

And I agree I don't think being coinfected has anything to do with sexual preference necessarily - most of my old boyfriends from the 80s were certainly not gay but they died of HIV/HCV anyway. But we did do an awful lot of partying and therefore they all got the same stuff as each other. Sad.

[meakea]

Nygirl...definitely a piece of the puzzle is missing...you are right that it just can't be as your boss's wife said.  Insurance companies do a lot of odd things but I'm pretty sure they know better than to discriminate so obviously.

[Bill1954]

http://www.hivandhepatitis.com/2008icr/easl/docs/042908_g.html
“Conclusion: Based on these findings, the investigators concluded that, "The short term results of [orthotopic liver transplant] in HIV-infected individuals are slightly inferior when compared with those observed in HCV or HBV monoinfected [orthotopic liver transplant] recipients.”
A slightly inferior outcome is far from “that will disqualify him”.
Bill

[Bill1954]

http://www.medscape.com/viewarticle/701942

"Central to our findings is the message that if you are HIV-positive and have any indication for liver transplantation other than hepatitis C virus [HCV], then the results are exceptionally good over the long term. There are also no differences observed from patients who are not HIV infected," Dr. O'Grady told Medscape Gastroenterology.”

As to your thoughts on the rest of it, I can’t even bring myself to comment. It’d be in the best interest of this forum if you’d bring your knowledge base into the twenty first century before you comment.

Bill

[mj6000]

The statement you made about most of the coinfected being gay is totally false also. HIV & HepC have nothing to do with your sexual preference!

[mj6000]

I meant to say thousands & thousands of coinfected people become cured of HepC...SVR.

[mj6000]

merryBe,you are very misinformed. I am HIV positive and my immune system is just fine. I just finished my treatment and have just had my 6 week post PCR test indicating I am still UND. Coinfection is in no way a reason not to treat. You only need to have your HIV viral load UND. There thousands upon thousands of coinfected people who treat and become UND.

[merryBe]

seems like co-infected might be part of the missing info.????

that will disqualify him, since the immune system can't handle the anti-rejection stuff without exacerbating the HIV.  Maybe the guy thinks it's cause he's gay, but the lions share of co-infected are gay, yet that's not why they are disqualified...

it's because their chance of survival and success are minimal, so they are at the bottom of the list for recommendations just like 80 year olds are. They are more likely to live longer without a TP.

On the other hand, they won't transplant drinkers or druggies either, for their risky behavior...so who knows...but I doubt it.  There's probably more to it than they are telling you.
There's also a whole lot of other things that disqualify people...blood disorders, yada yada yada...
Although, the way things are changing who knows....we do know insurances are refusing to treat druggies for hcv...why, because they are likely to reinfect themselves...and so the theory is it's a waste of time...and they are succeeding in their refusals where this open drug use is known...so I suppose in theory taking certain other risks could also make you a bad risk from the providers point of view.
(do not yell at me people, I'm only stating what the insurances or doctors may be thinking). (remember to get recommended for transplant your doctor has to think you are a good risk...and that means different things to different docs).
mb

[banarep]

I need to go back and recheck my old law books, but I do not think it is illegal to discriminate against gays.  Immoral and unjust, but not illegal.  In the past, gays were considered to be in a risky lifestyle and that alone was enough to prohibit transplantation.  

[yodennis]

I could understand astrological compatibility or understated cleavage barriers but being gay?.....C'mon!

[Trinity4]

Deb,

Your bosses wife reminds me of Teresa Giudice on the Housewives of New Jersey?
Does she sling tables accross the room?

[nygirl7]

Thanks guys I am going to assume I'm right and the fact that I spoke openly about having had hepC for the first time the other at work just got to her and she was being nosey. It just makes no sense to me at all!

But at least I know now how quickly the work gossip patrol is!