The rich white gay man does live in Chelsea. He is my neighbor and he is both buff and healthy. I recently met his “cousin” in the new Terrence McNally play last week,Mother and Sons, although that version had a fabulous Central Park West apartment with a view, a husband and a perfect child.
I live in Chelsea, too.
My friend Jay, a transgender man, lives in Chelsea also, but his apartment is in the housing projects. You won’t run into Jay in the neighborhood these days; he is homebound, recovering from surgery for lung cancer that cruelly developed only a few years after his difficult bout with breast cancer.
I am not pretending that I just invented the financial rainbow; we all know that the diversity in our community extends to the range of socioeconomic classes we belong to. I am writing because those of us who live in poverty are hidden, while the lives of the wealthy are highlighted in media and the news. More importantly, money has a huge impact on our health and health choices.
Jay attributes his poverty initially to being made homeless as a youth, thrown out of higher education, being physically assaulted and facing discrimination severe enough to cause PTSD. Exposure to DES in utero then created multiple chronic illnesses in early adulthood, derailing all his efforts to get his life back on track. The final drain on his remaining resources was his decision to care for his dying partner, Eleanor. It was during that time that Jay himself developed breast cancer. The healthcare system treated him just as poorly as they had Eleanor; the surgeon would not call to give Jay his malignant biopsy results, but referred him instead to the Psychiatry Department, simply because he was transgender.
Poor LGBT people may be hidden, but they are not a minority. The Williams Instituterecently found that we have substantially higher rates of poverty in our community than in the general public. Separate out different racial groups, and the numbers tell the same story, with more LGBT African Americans living in poverty than their African American heterosexual counterparts.
One out of five working-age LGBT adults received food stamps last year and one quarter of same-sex couples needed that government benefit in order to eat. (The national rate of food stamp eligibility is only 16 percent.) Jay ate organic food more often than most, because he supplemented his food stamps with dumpster diving at Chelsea grocery stores, where truckloads of fresh organic food was discarded. When his health permitted it, Jay collected far more than he needed and his neighbors, especially the disabled, were invited to stop over and take what they liked. (He gathered thrown out cleaning supplies as well).
Cancer is not for those without financial resources. A new study found that 25 percent of breast cancer survivors experienced financial decline and the difficulties were more often reported by those who began with lower incomes. Sadly, but not shockingly, poor people endure greater pain and suffering from cancer than most Americans.
Poverty exerts multiple additional stressors on cancer patients; it limits health care access, degrades nutritional status, restricts transportation alternatives to healthcare settings, limits access to alternative and complementary care, restricts the ability to research one’s cancer, “and frankly”, as Jay said, “the hopelessness and hardship of poverty grinds away the will to live.”
After returning home from the hospital, Jay had a friend go to the pharmacy with 5 prescriptions for post operative pain medications. Medicaid insurance refused to cover the main pain medication, a sustained release form of Oxycodone. Clearly, he couldn’t afford to pay for the drug himself. As a result, he had to use ibuprofen, which is contraindicated because of his kidney impairment, and the unmanaged pain made him unable to sleep. “That’s grisly”, he explained.
Since that time, Jay learned that what he believed to be stage 1 lung cancer turned out to be inoperable stage 4. He’s on borrowed time, navigating his way through all the issues that arise with very aggressive lung cancer, but compounded in his case by Medicaid’s refusal to cover not only his pain medications, but also diagnostic scans prescribed by his doctors. He is finding it impossible to fight for his care while too sick to function.
Jay said, “I can see why patients give up and just lapse into defeat. It’s way too much to deal with, and even I, lifelong fighter, often have moments of wishing to just fall asleep and never wake up.”
I run a national LGBT cancer organization and I am outraged and heartbroken.
Most of our research evidence addresses the greater cancer risks in the LGBT community, but that is only the beginning of our health story. LGBT people then face greater barriers to accessing quality healthcare and for people, like Jay, cumulative experiences like this have thrown him into poverty. Every life is unique and some have better outcomes, but the root cause of it all is discrimination. For Jay’s sake and for all our LGBT brothers and sisters, we must keep fighting. Discrimination is killing us.