In the face of daily struggles to live and to survive - with the ever present trope and excuse about the shabby state of the economy and its effects on being able to afford and enjoy the simplest pleasures or comforts, and with the wrangling for equal rights, gay men already have too much on their plate to think about another issue.
For many, health concerns are often not a priority. Some gay men are so acutely aware of and in tune with their health that the slightest sneeze or sniffle see them banging on their doctors' doors. But in the Black gay community, which is already at a disadvantage - for want of medical insurance or ability to afford health care, there is the additional skepticism and distrust based on a collective memory of the Tuskegee experiments on Black men, that going to a doctor is usually a last resort - when the pain has become too much to bear and the emergency room is the only option.
LGBT people, like everyone in the wider community, are not exempt from sickness and disease. Yet, while White LGBT are just as susceptible to other health maladies, through their health consciousness and access to medical networks, there are stark reductions, for example, in the numbers of those infected with HIV. Many in the Black gay community, on the other hand, for a variety of societal and cultural reasons, do not have that kind of access or often cannot afford medical treatment.
As a consequence, not only is HIV infection on the rise, but diseases spawned by the infection, poor life choices and habits, and the progression of various types of cancer - prostate, lung, kidney, colon, and anal - are taking their toll. The number of LGBT reporting battles with cancer is rising. Recently, one person died from lung cancer and another is fighting throat cancer.
One morning last fall, 32-year-old Mark Ramos* walked into the New York-based Callen-Lorde Community Health Center for a routine medical check up. After several questions about his sexual practices, he consented to a rectal exam. He dropped his pants and underwear and climbed up on to the exam table in a kneeling position. The doctor cautioned that he would feel a slight discomfort as he swabbed Ramos' anus and took the male equivalent of a pap smear. Two weeks later, Ramos, who came to the United States from a Caribbean country, was advised of the results of the pap smear, which suggested the presence of abnormal cells. He was invited to come in for a colposcopy, a more thorough examination; the male equivalent of a cervical exam.
Along with the stereotypes some people attribute to gay men, such as a heightened fashion sense, creativity, artistry, and culinary skills, men who have sex with men (MSM) have at least one other thing in common with women: One of the effects of infection from the human papilloma virus (HPV), which causes cervical cancer in women and anal cancer in men. Over the years knowledge and treatment for this virus have gradually "come out" of the classification as a women-only problem, where more and more men are receiving examinations, screenings, and if precancerous cells are discovered, treatment. Prior to Farrah Fawcett's death from anal cancer, many a gay man likely suffered painfully and died from this disease, which has now placed it on the radar as one more health concern. But the shame and embarrassment of letting it be known that a person was gay, and that he also had anal sex, has long prevented many from acknowledging the devastating effects of this cancer.
Researchers have discovered that HPV, often present under the foreskin of uncircumcised men, mutates and leads to cancer in women and in women when it comes in contact with the cells of the cervix or anus through unprotected penetrative sex. The U.S. Centers for Disease Control website explains that the same virus, often contracted through oral sex, also causes cancer in the throat and neck, areas with cell structures similar to the anus and cervix.
When Ramos arrived for his examination, Jeff Huyett a nurse practitioner specializing in anal health and gynecology at Callen-Lorde, attempted to put him at ease. He explained that the issue of anal cancer in MSM is rising and that it is becoming more urgent that gay men be examined and treated. Showing a diagram of the anus and the rectum, Huyett said that immediately on the inside of the first anal sphincter muscle - a collection of cells similar to the point in women where the cervix transitions to the womb - is the point where the anus becomes the rectum. These, he said, are a type of epithelial cells (similar to those found on the inside of the mouth) susceptible to HPV that, if exposed and left untreated, develop into cancer.
As he was being probed and prodded and given assurances that the examination did not mean that he had cancer, Ramos recalled the story of David*, who migrated to the United States from Colombia. David had discovered that he was experiencing extreme pain and difficulty whenever he had a bowel movement. When he checked with his doctor, he had already developed anal cancer. After several unsuccessful chemotherapy treatments at St. Luke's Roosevelt Hospital, David ended up going to the Cancer Treatment Center of America in Philadelphia, PA, to see what could be done for him.
With his partner Fred* at his side, David, who had recently celebrated his 50th birthday, was admitted with a high fever. His legs were swollen and the swelling seemed likely to spread upward to his abdomen, threatening his life. A tumor was discovered in one of his kidneys, and because of his weakened state, he was ruled out for surgery to install a colostomy bag. Fred, whose family came to the United States from Grenada, said resignedly that the Center advised them that with the different issues, there is no guarantee they could help. He and David had to come up with about $2,000 to afford to go to the Center, since David's insurance refused to cover any treatment.
Days before Christmas, David was readmitted to the Center and was placed on a morphine regimen to assist with pain management. A week before his readmission, he suffered a fall and fractured his left femur. Doctors at the Center said the cancer had spread to David's bones, making them more fragile. From his previous admission, David's treatment costs were more than $120,000. Fred said that David needed him now more than ever; he had to resign from one of his two jobs to help him with simple things, including getting dressed and going to the bathroom. For the first time Fred, who was with David for more than eight years, was suddenly thrust, involuntarily, into dealing with David's family who didn't trust him, and entering into the realm of talking with lawyers about a will, power of attorney, health care proxy, and making transparent financial decisions.
The Plague-Weary Gay Community
In an article, "The Hole Thing: The Conspiracy of Silence About Gay Men's Anal Health" published in the Spring 2007 issue of the White Crane Journal, Huyett writes, "Nearly 2,000 men a year will be diagnosed with anal cancer. The cancer is treatable with chemotherapy and radiation treatments and it's dangerous if it spreads throughout the body."
Huyett says that for the gay community which has become plague weary from dealing with HIV, that many are reluctant to address another health issue that is so closely related to sexual practices, which results in little or no advocacy. Huyett writes:
I find it astonishing that in the midst of the HIV pandemic, we are unaware of another important health risk. Clearly, anal cancer prevention means we have to acknowledge we have "butt" sex. It dredges up the feelings of homophobia that we thought we had long ago dealt with. To screen, we have to admit to our sexual practices in order to achieve good health.
The HPV Link
The CDC acknowledges that anal cancer is rising and is a cause for concern for the gay community. The CDC says that of the 20 million Americans infected with HPV, an estimated six million are newly diagnosed each year. In men, approximately 1 percent infected develop genital warts, while about 1,700 men get anal cancer. The CDC reports:
Most people who become infected with HPV do not know they have it. Usually, the body's immune system gets rid of the HPV infection naturally within two years. This is true of both high-risk and low-risk types. HPV is also very common in men and often has no symptoms...In general, HPV is thought to be responsible for about 85 percent of anal cancers, 70 percent of vaginal cancers, and 40 percent of vulvar and penile cancers.
"While anal cancer isn't that common, it's preventable. But you can only prevent anal cancer if you know you have HPV, are screened, and have the precancerous areas treated. You can only do this if you live in an area where anal-pap-smear testing is available and resources exist to provide preventive follow-up," says Huyett.
The Poz Community
A December 2010 article in POZ, a magazine for the HIV-positive community, points to a study article published in the Journal AIDS, which said that despite being one of the most expensive methods to screen for anal cancer, compared to the cheaper but least effective tests, a high resolution anoscopy (HRA) is more cost effective in producing a clear result. The HRA examination involves a provider using a plastic anoscope, a small camera, tissue staining solutions, and taking a tissue biopsy, which is sent for analysis.
The magazine said that rates of anal cancer are as much as 160 times higher in HIV-positive men who have sex with men (MSM) than the general public. For this reason, many experts recommend annual screening.
"For HIV-infected MSM and where resources permit, anal cancer screening should be initiated with the direct use of HRA," concludes the study's authors.
However, also in December 2010, the U.S. Food and Drug Administration announced the approval of Gardasil as a preventive vaccination for anal cancer. In October last year, the government agency had issued an approval of the vaccination to prevent genital warts in men and boys. The warts are caused by HPV types 6 and 11 in men and were found to affect boys between ages nine and 26. At the time when the FDA approved the vaccination for HPV types 6, 11, 16, and 18, for cervical cancer in girls, between nine and 26 years old, some mothers had expressed strong reservations and concerns over the side effects on their daughters; there was no preventive for men and boys.
The Power of Prevention
In a press statement by the Food & Drug Administration, Karen Midthun, M.D., director of the Center for Biologics Evaluation and Research, says:
Treatment for anal cancer is challenging; the use of Gardasil as a method of prevention is important as it may result in fewer diagnoses and the subsequent surgery, radiation or chemotherapy that individuals need to endure.
Although it seems as that anal cancer is uncommon, the FDA said, rates of incidences are increasing with HPV associated with approximately 90 percent of these cancers. The press statement said that Gardasil's ability to prevent anal cancer and the associated precancerous lesions caused by anal HPV-16/18 infection was studied in a randomized, controlled trial of self-identified MSM. At the end of the study, the vaccine was shown to be 78 percent effective in preventing HPV infection.
This population was studied because it has the highest incidence of anal cancer said the FDA. But, the statement cautioned, Gardasil would not prevent the development of anal precancerous lesions associated with HPV infections already present at the time of vaccination and its efficacy is better for boys and men prior to becoming infected with HPV strains contained in the vaccine.
According to the FDA, and Merck and Company, Inc., the New Jersey-based manufacturer, the vaccination is administered as three injections over a six-month period with headaches, fever and pain at the injection site, itching, redness, and swelling and bruising as the most common side effects. The FDA said that receiving the vaccination does not preclude the need for continued anal screenings.
"We are pleased that with this new indication for Gardasil against HPV-related anal cancer and disease, both males and females can be protected against cancer, which further reinforces the importance of vaccinating both genders," Richard M. Haupt, M.D., MPH, executive director, Merck Research Laboratories says in an interview with Business Wire.
The Importance of Regular Examinations
Following a biopsy of some abnormally appearing cells in his rectum and a caution by Huyett that it does not mean he has cancer, Ramos' doctor confirmed that he did not have anal cancer. The abnormal cells, he was told, appeared because he recently had a bout of Chlamydia and was advised to do another examination in six months. Huyett says that as a gay man, every year he has an anal examination and urges all gay men who engage in anal sex to be examined and start treatment if necessary, before it becomes too late.
David died in January. Fred, who shared a home with him, is today almost homeless, staying with friends, because the apartment he and David occupied related to David's job and he had to move. At the time of David's death, although he and Fred were together for several years, they weren't married. As such, Fred feels he has no legal standing and is still wrangling with David's family over his will and possessions.
Six months later, Ramos was again probed and biopsied. Two weeks later Huyett called to tell him that he had precancerous cells and he needed to schedule an appointment to begin treatment. After witnessing the pain and suffering David endured, that news was in itself devastating. The treatment, he was assured, involves a laser that would cut through the cells, cauterize them, and following this procedure, the body's natural immune response would be expected to kick in and eradicate the virus from the cells. He would be due for another examination in a year.
* Names changed for privacy
This article was previously published in Out In Jersey. It is reprised to continue raising awareness of the progression of anal cancer in men who have sex with men, as an unaddressed health risk, which if unattended leads to slow and painful death.