Patricia Nell Warren

AIDS Suicide Is Still With Us

Filed By Patricia Nell Warren | July 12, 2012 12:00 PM | comments

Filed in: Living
Tags: ADAP cuts, AIDS suicide, drug resistance, failed AIDS treatment, managing, pain medication, palliative care, perverted lifestyles, quality of life, suicidal ideation, taboo

Recently a friend of mine phoned me, devastated, to share some news. A gay male friend of hers had committed suicide -- quietly, suddenly, without warning. He had been living with AIDS and ARV treatment for a number of years; bigstock-Suicide-8033710.jpgperhaps he'd reached the point where ARV drugs were no longer delivering that "improved quality of life" promised by the FDA and the pharma industry. Rather than suffer slowly through the inevitable decline to the very last day and hour, he evidently decided to take control and end his suffering quickly.

America's suicide rate has spiked in the last decade. Suicide is now 10th on the cause of death list. For many, bankruptcy, unemployment and homelessness are right up there as motives. For vulnerable teens, bullying at school is often the motivator. In our armed forces, suicide among emotionally distressed soldiers now claims as many lives as combat does.

Against this somber background, it's not surprising that AIDS suicide rates are up as well.

Indeed, in the epidemic's three decade history, AIDS suicide has become part of the epidemic's vast global texture - whether it's the seemingly out-of-the-blue death like that of my friend's friend, or the ceremonial planned exit dramatized in the now-classic 1996 film It's My Party. Indeed, the "six degrees of separation" that binds humanity together means that many of us - myself included - have been touched in some personal way by suicides among PWAs that we personally know and love.

But suicide's ubiquity, and its persistence as a "moral" (read "religious") issue, haven't made it any easier for Americans to deal with.

Indeed, our government seems to think that its National Strategy for Suicide Prevention (NSSP) - a program on which the CDC and NIH cooperate with several other agencies - will work merely because it might do better interventions and surveillance of people's behavior. Unbelievably, some points in its program are devoted to keeping people from accessing potential tools of suicide - like redesigning cars so people can't use them for carbon-monoxide poisoning. Government people who waste taxpayer dollars on such efforts evidently don't get it that people bent on ending their own lives will find a way to do it, no matter how many road blocks are thrown in front of them.

Slated to Disappear

My friend's phone call moved me to review some of the literature on AIDS suicide.

A routine web search dredges up a whole raft of studies, editorials, and pronouncements from the 1980s and early '90s. They mirror the fact that suicide is still deeply taboo with many people in our country - viewed as a "sin against God." Where AIDS is concerned, suicide is still viewed by some as the most deeply taboo expression of a disease that is taboo to many. During that early period of the epidemic when AIDS was still universally defined as a "death sentence," AIDS and suicide often went hand in hand in the news. In one study of 207 New York City women, 42 percent of them attempted suicide within the first month of being diagnosed with HIV.

In another study of that era, noted psychiatrist William Breitbart, writing from Sloan-Kettering Memorial Center, commented, "A study of men with AIDS in New York City (40) demonstrated a relative risk of suicide 36 times greater than that of males in the general population. ... the relative suicide rate of men with AIDS aged 20 to 39 years was 21 times the rate of men without AIDS. At the time of these studies, AIDS was primarily seen in the male homosexual population, so it is not surprising that all the suicides reported occurred in males. AIDS patients who commit suicide generally do so within 9 months of diagnosis."

Breitbart mentioned another study, done on HIV-positive military personnel, which highlighted a rate of suicide attempts that was 16 to 24 times higher than that same rate among non-infected personnel.

But an unsettling fact emerged from my review. After the introduction of treatment by AIDS drugs in the mid-1980s, the dark shadow of that "death sentence" was supposed to be lifted for good - not only physically, but emotionally, spiritually and mentally. Replacing it was the pharmaceutical industry's rainbow promise of many years of "living with AIDS" and "managing AIDS as a chronic disease." Today, treatment by some of the 125 ARV drugs on the market is assumed by many to mean indefinite and relative good health, ability to work and have loving sexual relationships, to enjoy life and find happiness.

So thanks to the drugs, AIDS suicide was supposed to disappear. But it didn't.

Judging by a 2010 article in American Journal of Psychiatry, titled "Elevated Suicide Rate Among HIV-Positive Persons Despite Benefits of Antiretroviral Therapy," the experts appear to be somewhat surprised that the suicide rate among people living with HIV/AIDS is still a towering three times higher than that among the general population.

We have to ask why that is happening.

"Treatable Psychiatric Disorders"

Some experts are convinced that AIDS suicide is almost never a rational action. They believe that a person has to be driven by what the article calls "comorbid psychiatric conditions" in order to even seriously consider "suicidal ideation," i.e., thoughts of ending one's own life. Indeed, the American Institute for Suicide Prevention puts out the statement that 90 percent of suicides involve what they describe as a "diagnosable and treatable psychiatric disorder." (AIDS experts do make an exception for depression and dementia that result directly from physical and chemical changes in the AIDS-afflicted body.)

Of course, the diagnosis of a psychiatric disorder creates a reason for the medical industry to throw even more drugs at the PWA - in the form of antidepressant meds. Ironically, some antidepressants are themselves the possible cause of suicide, especially among young people. In 2004, the FDA issued a warning about this, following many years of outraged complaints over the mounting suicide statistics among children being treated with certain drugs.

In 2006, the Washington Post finally reported on this emerging awareness, saying, "Widely used antidepressants double the risk of suicidal behavior in young adults, from around three cases per thousand to seven cases per thousand, according to a huge federal analysis of hundreds of clinical trials. It marks the first time regulators have acknowledged that the drugs can trigger suicidal behavior among patients older than 18."

But we have to look still deeper, at other factors that may be driving this new suicide trend. It's likely that some AIDS suicides are not the result of "psychiatric disorders" or negative antidepressant chemistry at all. Instead, they may be the understandable human reaction to finding oneself in a seemingly intolerable situation, with no discernible way out.

To paraphrase a question from the film Titanic, which the young hero asks after he saves the girl from jumping off the ship: "What could have happened to these people with AIDS to make them think they had no way out?"

Reasons to Stop Living

According to the statisticians, more men than women commit AIDS suicide. But regardless of gender, the PWA is subjected to AIDS-industry rhetoric - that if only he or she is patient enough enough, and adheres to the prescribed ARV treatment obediently enough, he or she will somehow reach that golden shore - those sunny years of improved quality of life that the drugs supposedly confer. In short, successful treatment alone is supposed to be a reason to live.

But in most cases, there is the bald scientific fact that ART drugs aren't effective forever.

Sooner or later, there is growing resistance of different HIV strains to the different drugs. Sooner or later, the tipping point is reached where treatment begins to fail, and that PWA's health may finally begin to fade. The golden years of reprieve are finally over, and the individual must now face the inevitable. This can be a shattering moment for that person's psyche - hearing the report from his or her caregiver that the most recent resistance-test results are not good. Or hearing that other tests are showing the first signs of opportunistic infections (Kaposi's sarcoma is on the upswing again) or lethal side effects to liver or kidneys.

On the heels of this bad news, a person may plunge into deep depression and despondency about what's ahead. This is the moment when the psychiatrists want to rush in with their screening and their own array of drugs, to keep the PWAs with waning morale from harming themselves. But antidepressant meds aren't a watertight solution either, as we've already seen.

This is what may have happened to my friend's gay male buddy.

Pain as a Major Factor

Unremitting pain is also important to look at, as a reason for a PWA to exit life. As far back as the early '90s, William Breitbart, while serving as chief of psychiatry at Sloan-Kettering Memorial Hospital in New York, became concerned at seeing pain as a growing suicide issue among his AIDS patients. In a 1993 study, Breitbart made this flat-out statement:

According to several preliminary clinical studies, pain is a significant problem for patients with HIV infection and is associated with psychological and functional morbidity. Clinicians have neglected pain management in AIDS patients, focusing instead on treating life-threatening opportunistic infections, cancers, and neuropsychiatric syndromes such as AIDS dementia complex. There are few systematic studies that examine the prevalence of pain, describe specific pain syndromes, or examine the relationship of pain experience and psychological factors in the AIDS population. One recent retrospective chart review of hospitalized patients with AIDS revealed that more than 50% of patients required treatment for pain, with pain being the presenting complaint in 30% (second only to fever).... At MSKCC, we examined the prevalence and characteristics of pain in a population of HIV-infected persons receiving medical care in an ambulatory setting. Thirty-eight percent of ambulatory HIV-infected patients reported significant pain.

Yet, in the years since Breitbart reported these ominous observations, American society has become so obsessed with the moralistic notion of preventing drug addiction that we are increasingly reluctant to deal with the stark need for pain relief in chronically ill and dying people. Already in the early 2000's, all across the country, the DEA was pushing state medical boards to investigate pain-management prescribing. With the 2011 trial of Michael Jackson's doctor, the pain-med crackdown went into even higher gear.

No sane person would deny that it's important to stop "doctor shopping" by people who are really addicted. Yet where is the balance that is needed here? Today a doctor who prescribes legitimate and legal pain relief might be slammed with bogus "pill mill" charges by a state medical board that aims to look good on paper by racking up prosecutions. Understandably, many physicians are now refusing to do pain management - with the obvious negative results for pain-ridden patients.

In a recent Journal of the American Medical Association, an article by author Joan Stephenson is headlined, "Experts say AIDS pain 'dramatically' undertreated." It is inhumane to withhold pain relief from people who are moving from chronically to terminally ill, if the growing pain destroys any quality of life that they might still be able to enjoy.

Worse still, palliative and hospice care is now expensive enough that it is falling victim to budget cuts. Example: a 20-year program in Marin County, California, that was axed in 2009, leaving hundreds of seriously ill PWAs adrift.

The bottom line: Anyone with a low pain threshold and fierce untreated AIDS pain can find reason enough to look for a way out.

Religious Judgmentalism

Another reason for a PWA to sink into depression and hopelessness: the worsening mean-spirited religious judgmentalism sweeping the country.

Some conservatives feel that AIDS treatment should be reserved only for the "innocent victims," namely for children who are infected through "no fault of their own," or for adults who might have been unknowingly infected by a blood transfusion or a philandering spouse. But, in the opinion of these conservatives, the individual who was infected through drug addiction, or through what is viewed by some as "immoral or perverted" sexual activity, does not deserve any consideration or any taxpayer funding for care. North Carolina minister Charles Worley made headlines recently for announcing that the way to cure AIDS is to kill all gays.

Some surveys try to prove that AIDS-phobia has actually decreased in the U.S., thanks to a growth in public understanding of AIDS. According to Pew Research, "Just 23% of the public now agree with the statement that AIDS might be God's punishment for immoral sexual behavior, while 72% disagree. When this question was first asked in 1987, public opinion was divided on the question, with 43% agreeing and 47% disagreeing."

But these statistics don't reveal the real problem. That disapproving 23% of the public now has many more elected officials and paid lobbyists in government than it did in the 1980s. Example: North Carolina State Representative Larry Brown, who stated that the government should not pay for treatment for people who get AIDS through "perverted lifestyles." It's little comfort to PWAs that some of these elected extremists would also deny taxpayer monies to care for smokers, alcoholics and the obese, because these people are also ill "through their own fault."

Congress is now packed with church-owned Republican politicians who have come up with the astonishing notion that "the Bible prohibits government healthcare because it's socialist, and Jesus opposed socialism." These are the same pols who vote to balance the federal budget by axing any publicly funded health services that they don't support on "Biblical grounds" - and that includes HIV/AIDS services. Speaker of the House John Boehner, a staunch Catholic, led the way in slashing over $32 million in AIDS services, even as the House upped the funding for DOMA defense.

Among the cuts would be research funding for the NIH, and state AIDS Drug Assistance Programs. As of June 14th, the wait list to receive ARV drug treatment through the nation's AIDS Drug Assistance Programs had hit 1,963 people across 9 states. The number of people waiting to receive medication through state-run drug programs has increased more than 5000% since August 2009, according to the National Alliance of State and Territorial AIDS Directors. Result: in any state where ADAP is now virtually unavailable, an individual's reaction to finding that he or she is being denied treatment could well extend to suicide.

Ironically, some state and federal budget cuts are even targeting suicide-prevention programs. In a recent study, the top 10 states with the biggest cuts in mental healthcare, including suicide prevention, were mostly red states, with Alaska leading the way with a 35% reduction in this area of funding.

Likely we will see most of these AIDS suicides among middle and low-income people of all ages, as well as the homeless and indigent - people that the bible-based One Percenters don't care about anyway.

In my unhumble opinion, the hard-hearted politicians and church leaders who create this climate will bear significant blame for these deaths - the very deaths that they have the nerve to label "sins against God."

How Can Suicide Prevention Be Effective?

Once upon a time, America had many progressive and socially conscientious American church people who were ready to leap into the breach, with private-sector relief for everyone who needed it. Compassionate folks like these created everything from Depression Era soup kitchens to international disaster relief to big hospital systems. Today I'm wondering where this private-sector religious progressivism has gone, as a potential national force. In its place is a vast growing void in lost services created by ultraconservative religious callousness.

Will the socially conscientious church people finally organize and help fill that deadly void? Will they join hands with equally compassionate and conscientious Americans who are not religious believers of any kind - reaching across the lines of creed, color, gender, sexual orientation, and political positioning - in order to build a private-sector support network that will replace the slashed government programs affecting human health and welfare? One that will deal with potential AIDS suicides in a realistic and truly helpful manner? I wonder.

Last but not least - we have to ask what happens when an individual's life is overrun by many of these pressures all at once? By religious judgment coming on top of treatment failure, social stigma, unbearable physical pain, denial of access to treatment, and/or the combined devastation of AIDS and AIDS-related infections? How in the world is this person's morale going to be strengthened, so that he or she can fight off the thought of suicide as a way of escaping that vortex of hopelessness looming ahead?

We have to answer this ultimate question if we're going to stop the ongoing uptick in U.S. AIDS suicide.

Truly effective "AIDS suicide prevention" won't be achieved by relentless screening and psychiatric medicating. It will have to be reality-based. It can only be achieved when our society has the courage to eliminates social and medical circumstances that would cause a man or woman with AIDS to consider suicide in the first place.


Further reading:

"Elevated Suicide Rate Among HIV-Positive Persons Despite Benefits of Antiretroviral Therapy"

"Suicide Risk and Pain in Cancer and AIDS Patients," by Wm. Breitbart

Palliative Care for Patients With HIV

(A shorter version of this commentary was originally published in the April 2012 issue of A & U Magazine. Suicide clipart via Bigstock.)


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