Ice buckets have been featured in the news much of late: Celebrities-and ordinary mortals, too-are subjecting themselves to a cold shower by a few hurled gallons of ice water, dared by their friends to do it, to benefit research on Amyotrophic Lateral Sclerosis, known as ALS, or Lou Gehrig’s Disease.
This brilliant PR campaign, reminiscent of a fraternity stunt for charity, has so far raised $100 million, according to a recent NPR story on ALS, which also raised critical questions on the quality of scientific research today. In the case of ALS, which has proven to be severely disabling and often fatal within three years of onset, no effective drugs or treatments have been found.
In a period of shrinking federal support for basic research some scientists have been scrambling to get their names into print-and their labs into money-by publishing “revolutionary,” “pathbreaking,” “earthshaking” studies that rely on deeply flawed protocols with many cut corners and little peer review. Science itself runs the risk of becoming merely a monetized cog in the wheel of commerce, little more principled than the snake oil barker at the traveling medicine show.
Perhaps this is an overly cynical view. But other critics of the ice bucket phenomenon have cited statistics showing that ALS, while extremely serious for those who suffer from it, is not one of the world’s major killers. Many other diseases can claim that title. When the faddism of the ice bucket wanes, as surely it will in time, will the PR team who came up with it devise something equally attention-grabbing for ALS, or perhaps move on to another disease?
One could be forgiven for thinking that Marx’s “anarchy of private production” applies. Is it the need, the demand, the numbers of people affected, that determine funding and research? Or it is the whim, the “anarchy” of the marketplace, perhaps a well-heeled philanthropist’s personal idée fixe, to focus on ALS this year, Ebola next year, and later some other cause, maybe the local philharmonic orchestra or another endangered species?
Speaking for myself, I’d like to see a little more central planning. I know I am not alone: Many societies around the world have created national health programs and federally-funded research centers, where the best scientific and medical minds, working with generous budgets administered by the most competent and disinterested professionals, have committed to organize treatment and research in approximate proportion to current and projected needs.
Those countries are not necessarily only socialist. Some are advanced social democracies where major areas of life, such as healthcare, are simply thought of as the commonweal of the nation. In such places, the sheer volume of philanthropic fundraising nowhere compares to what goes on in the U.S.
This tendency in my thinking is not new. I’ve been writing an autobiography over the last few years, and in the course of my research uncovered the draft of a will that I composed in the mid-1980s-a document that I never formalized, but that’s another story. It’s interesting what I had to say about donations: “If anyone wishes to make personal or organizational contributions in my memory, I would prefer that these not go to funds supporting health research (cancer, AIDS, etc.), as I have always believed that such research is entirely the responsibility of government to undertake, not the private sector. Instead, such contributions should go to organizations and publications whose purposes are consistent with my political and social outlook-humanitarian, secularist, internationalist, and supportive of gay and general sexual liberation, interracial justice and peace.”
In a way, I’m shocked by my own statement. Especially as a gay man living in New York City at the height of the AIDS epidemic!
Tremendous humanity involved
Naturally I observed the tremendous humanity involved in the gay and lesbian community stepping up to the plate in face of the AIDS crisis, and I played a certain role myself in attending benefits, making contributions, visiting the sick, singing at funerals, and so forth. At the same time I decried the Reagan Administration’s complete, disgraceful inaction on AIDS: He never even publicly uttered the word “AIDS” until the last year or two of his presidency. Earlier intervention, with research, treatment, and widespread, unbiased public education recognizing in a medically and morally neutral manner the fact of sex between men, would have prevented millions of infections and slowed down the progress of the disease. “Silence = Death,” the AIDS activists rightly proclaimed, as they sat in and got arrested by the hundreds in the fight for speeded-up treatment protocols.
From the beginning, I observed how New York’s Gay Men’s Health Crisis emerged, as well as hundreds of other organizations around the country, largely following the model of other proprietary disease support groups-cancer, birth defects, leukemia, multiple sclerosis, etc. I promulgated to anyone I could the idea that instead of competing against each other for precious donor dollars, the whole nation ought to join in a mass movement for universal health care, such as Europe had, or the socialist countries, with no health “insurance” at all but the good faith of the government acting for the benefit of all.
As someone sympathetic to the Cuban Revolution-more than that, highly enthusiastic about it-I nevertheless raised many questions many times about the way the Revolution regarded its gay/lesbian citizens in its first thirty years or so, up to about 1990. We all know about the imprisonment, the re-education camps and overt social prejudice in the early years, and the low esteem many LGBT activists held for Cuba (for all of which Cuba at its highest governmental levels has in later years expressed deep remorse). I was among those severe critics, with my North American civil libertarian convictions, who felt appalled by the Cuban government isolating HIV and AIDS carriers into special sanatoriums miles away from Havana.
As much as I admired the overall advances in the Cuban healthcare system, and recognized how much we could learn from it, I perceived an unjustified, irrational and inhumane intent to stigmatize HIV/AIDS inappropriate for any enlightened country. I connected HIV/AIDS “quarantine” with Cuba’s poor attitude in general toward gay people.
In the U.S., AIDS spread rampantly in part because we had no effective public education about the new disease. At first no one even knew how it multiplied. The system of silence, denial, and punishment for having acquired HIV demonized both the disease and those living with it. Since in its early years in the U.S. it appeared to affect mainly gay men, it did not seem overly paranoid to us in the gay community that unofficial policy amounted to little more than “Let them all die.”
Contrast, for example, the phenomenon of “Legionnaire’s Disease,” which erupted on a cruise ship full of American Legion vacationers and attracted large-scale government interest and research, but which killed no one. Today ship-borne illnesses are so common that barely anyone takes notice.
With the perspective of more than 25 years’ distance, I have evolved a substantially different thinking on the issue of quarantine. Of course, any suggestion of quarantine at that time would have offended my understanding of civil liberties in a modern society. But faced with a new, unknown epidemiological crisis that no one really understood, the Cubans, in their fearful wisdom, resorted to the classic strategy of isolation, which in fact had worked historically for many other diseases. This was planned, organized, socialist healthcare policy seeking to ensure the good of the entire population. (It appears that HIV/AIDS had been introduced to Cuba by its soldiers returning from helping the Angolans defend themselves from apartheid South Africa, so in those days the disease was not even necessarily identified only with gay men.)
Today I have no doubt whatsoever that isolating those few individuals at that early stage, before they could infect other people, did prevent AIDS from becoming the devastating epidemic in Cuba that it became in Haiti, elsewhere in the Caribbean, and many countries in Africa, where in some places HIV infection runs up to 20% or more of the population, and treatment is sketchy. Cuba has a lower HIV-infection rate than any other country in the Americas. Of course by now their understanding and treatment of the disease are far more scientific and humanitarian. (One co-factor to the low HIV incidence is the near absence of recreational injectable drugs.) If I were living with HIV in any of the world’s poor countries, I would want to be a Cuban, though naturally it would help if the U.S. blockade finally came to an end.
Started with socialist politics
From my many years of association with the Workmen’s Circle (Arbeter Ring), a national secular Jewish organization that started off with openly socialist politics, I have also moderated my hardline view of charity and philanthropy. Workmen’s Circle has advocated for a national healthcare system since its founding in 1900, and I have taken from it the idea that Yes, we urgently need a national health plan and generous public investment in medical research; but in the meantime we must look out for one another the best we can. My thinking also changed in the course of a long struggle to comfort and support my best friend and partner Ricky, who died in 1993, sadly a couple of years before the new antiretroviral drugs came along.
Well, I am living with HIV in the richest country the world has ever known, and still this is no paradise. With a million-plus infected people, HIV/AIDS is still a threat here in the U.S., and some of the same old factors apply: Shame. Silence. Ignorance. Invisibility. Alienation. Racism. Sexism. Tragic gaps in educating young people about sexual health. Every 9 ½ minutes, someone in the U.S. is infected with HIV-more than 50,000 new infections every year nationwide, and six new infections in Los Angeles each day. Half of those infected with HIV are under the age of 24, more than a few of them young kids kicked out of their homes when their families learned they were gay. According to public health authorities, 20 percent of those infected with HIV do not even know it. American notions of civil liberties allow parents to keep their children unvaccinated against crippling diseases, thus endangering the whole population; and in the absence of comprehensive, universal healthcare, allow vast numbers of people to go around completely unaware what infectious diseases they may be carrying.
So for the second year, on October 12th, in the event’s 30th year, I, who was once so critical of healthcare charity, am participating with thousands of others in AIDS Walk Los Angeles. I’m walking with the Being Alive team, a self-help organization I’m affiliated with, entirely run by people with HIV, providing medication and referrals, art classes, yoga, acupuncture, counseling and therapy, cultural outings, a speaker series, all to help improve our health and our spirits. Funds raised through the AIDS Walk also support vital prevention efforts that help stop the spread of HIV.
As I write this I have just passed the halfway mark on my fundraising goal. Here is my personal page link.
Profound questions still remain for any thinking person: Is my disease (or issue or cause) more important than yours? Will socialism, however it looks eventually, meet all my aspirations about allocating just the right attention to the right priorities at the right time? Will the need for charity ever entirely disappear?
Don’t worry. I still support Medicare for All here in the U.S. The sooner the better. But until then, and maybe after then too, one walk, one ice bucket at a time.
Photo: The author on the 2013 AIDS Walk, with a blind friend who was able to walk the whole 10K down West Hollywood’s streets without his cane, holding hands. PW.
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