Hans van Maanen
This week, spurred on by the National Action for Organ Donor Registration, the same discussion flared up again: homosexuals feel unfairly treated because they, based on a concern over AIDS, are not welcome as organ donors. This same discussion has already been had concerning the donation of blood, and now it is being held over organs like the heart, kidney and liver, and tissues like corneas and skin. But what kinds of risks are we actually talking about here?
What problem do people have with a homosexual cornea? Why may the kidney of a homosexual be transplanted only in the most desperate situation, only when there is no other option? Because the AIDS virus lies in wait. With homosexual men the AIDS virus happens to be more common than with other men, and this warrants, according to the authorities, the exclusion of all homosexuals from organ donation.
In these next few weeks 12.2 million adult Netherlanders will receive a form by which they can register themselves in the organ donor register. If they choose to make their body parts available, it will be possible to make use of these after their deaths. No other questions are asked of these potential donors. But not everyone who dies in intensive care and has identified themselves as an organ donor is eligible for this. There's no point in using the heart of someone who has had an infarction or the lungs of someone who has asthma. Similarly, most would prefer not to receive organs which have cancerous cells or have been infected with a dangerous virus.
And the AIDS virus naturally fits under that last category. It isn't practical, according to the reasoning of the authorities, to give someone new kidneys if because of that transplant they run the risk of contracting the AIDS virus. Certainly with tissue transplants, which usually are less pressing than organ transplants, every risk must be eliminated from the equation. And thus homosexuals are eliminated because the AIDS virus is much more common with them than with heterosexuals.
None of this is communicated in the letter by the Donor Action. Homosexuals can fill out the form and make all their organs available, but when the time comes, they are unceremoniously refused. They might just as well not have filled out the form at all. The protocol that hospitals have to follow in donations states that [homosexuals] "belong to the risk-group for HIV-transfer." It is worth noting that no distinction is made between women and men: homosexuality is grounds enough for refusal, even though the AIDS virus is less common with homosexual women than heterosexual women. The authorities follow here the directive of the Council of Europe and the European Association of Tissue Banks. It doesn't look like any independent research or thinking has been made use of at all. The foggy-headed authorities point to each other for statistics, but nobody seems able to produce any. The exclusion of homosexuals seems primarily to be based on to the irrational fear ! of the AIDS virus.
The core of the problem is not so much the AIDS virus itself as much as the fact that the virus can't always be intercepted. All donatable items, from blood to kidney are routinely checked for the AIDS virus. What people are afraid of is the short period directly after infection in which the virus is already in the blood but cannot yet be detected. This offers the virus a window of opportunity. It isn't common, but it still happen--a few times a year every few million blood donations--that the virus still ends up in donated blood, despite all precautions. People don't want to run the same risk with organs and tissue.
But how great is that chance, and how does it compare to other risks that the recipients of organ donations run? Does the risk merit the precaution, or are the authorities once again fishing with dynamite?
A rough calculation proves that the latter is the case. If all eligible people participate, then there are 12.2 million donors. The number of gay men in the population is about 2%, or about 250,000 donors. From the large Amsterdam cohort study it appears that despite all the available information about 1% of these men become infected with the AIDS virus. Because there aren't any better statistics for the rest of the country, we'll assume that in conformity with the Amsterdam numbers approximately 2,500 homosexuals become infected. If we further assume that the period of which people are so afraid, the "window," lasts about 2 months, then each year there are just more than 400 "dangerous" gay donors. In total there are 12 million donors, so one of 30,000 can pass on the virus undetected: .003% This number can moreover be estimated higher or lower according to need: "the window" has been given generously, and it might be set at one month as well, and even then ! half of the "window" donations don't lead to an infection. On the other hand the percentage of active gay men might have been estimated too low, and the number of infections might even still increase drastically in the coming years.
In the Netherlands presently about 600 organ transplants are performed each year. According to Euro-Transplant, the organization that oversees this, that number would double under unrestricted requests. That brings the number to 1,200 transplants per year. If the virus is transmitted with these numbers one in 30,000 times, that brings us to one extra transmission every 25 years.
The number of tissue transplants is presently somewhat higher, at about 2,500 a year, and with unrestricted requests that number could also double. That means on extra infection every six yeas.
Both types of transplants together deliver one extra AIDS case every eight years roughly--at the moment some 200 new cases are diagnosed every year.
How does this risk compare to other risks? With organ donations people are afraid of three thing in particular: an undetected blood poisoning, undetected tumors, and undetected HIV. It appears, from Euro-Transplant's statistics, that after blood poisoning nobody's organs are ever used. In contrast, it isn't very rare for a malignant tumor to accidentally be transplanted along with the organ: that happens in less than one-half of one percent of the cases--say one in three hundred. With 1200 transplants that equals two a year, or fifty cancer cases in ten years. For tissue transplants we'll use the same numbers again and ignore other extra risks (like undetected virus infections and Creutzfeldt-Jakob Disease), and the number we arrive at is another 400 cancer cases in 10 years. We'll also forgo the tens of fairly serious complications that occur due to undetected bacteria and other viruses every year.
Now we can debate again over the question of whether it is reasonable to exclude homosexuals as donors, but the confusion is in any case brought to a somewhat higher level. It has to do with one extra AIDS case in eight years, on top of 400 cancer in the same period, and weighed against the complications inherent in a large group of people.
The protocols that the hospital uses allow no room for uncertainty: homosexuality is by itself grounds for exclusion, as well for organ donation as tissue donation. How the doctor establishes homosexuality is left unspecified--apparently such things immediately come up in discussions with the next of kin.
Also the explanation that the Organ Association gives in its booklet The Most Frequently Asked Questions About Organ and Tissue Transplants is unambiguous: in the decision by the Council of Europe "it is determined that the vital organs can be transplanted from a monogamous living gay man, in whom no HIV is detected, as long as this has been discussed with the responsible doctor and the family of the eventual recipient. With the recipient there must be the possibility of a life threatening situation where delay of transplant will lead to death." ...There are better ways to make it clear to people that everyone is welcome as donor.
So then remains the question of whether the blunt exclusionary policy is justified. By paying attention to homosexuality the men who ought to be locked out are not locked out. From various studies it has become apparent that it is not so much homosexual as bisexual men who present the risk--and aren't identified as such. Bisexual men thus form, in fact, a much greater risk than gay men.
But anyway. Isn't it worth considering not to ask the next of kin about the sexual preference of the deceased, but rather about the number of unprotected sexual contacts that this person might have had in the last months before their death? Maybe they'll know just as little about this as about the deceased's sexual disposition, but at least then the doctors will be getting information they can use.