POSITIVELY AWARE JULY/AUGUST 2011
Our nation is only as strong as the citizens within it, and if we can’t even provide for the health and well-being of our children, who will ultimately take our place? Where is the nation going to be in 20 years?—Samantha Van Vleet, Yahoo! News
First the good news—after hearing from hoards of angry, scared, and suspicious constituents at town hall meetings during the Congressional spring break, Republicans came back to Congress with a little less fire in their bellies about dismantling Medicare and Medicaid in the name of “balancing the budget.” And on May 25, the Senate sent the same clear message that the voters in New York’s 26th Congressional district sent when they elected the first Democrat to hold that House seat since the 1800s—NO DESTROYING MEDICARE!
However, debate about deficit reduction and budget balancing is ongoing as of this writing and though President Obama has said that he won’t allow Social Security, Medicare and Medicaid to be dismantled, there may still be cuts and reductions in benefits that are devastating for anyone relying on public health programs for their only access to health care. There has also been no repeal of the Patient Protection and Affordable Care Act (known as the Affordable Care Act or ACA) as of yet, but bills are introduced almost daily by Republicans in both chambers seeking to de-fund or dismantle some of the most beneficial aspects of the reform law, such as the expansion of Medicaid in 2014 that would cover 23 million more people. Unfortunately, the fact remains that no one in Congress, not even the Democrats, seems to understand what all average Americans know already: When you have cut out everything but the rent, food, and electricity, there has to be an increase in income (whether that means a second or third job or selling Grandma’s silver) before debt can be paid off and the budget can be balanced.
But until they realize that we, the voters, understand the necessity to pay for the things we want, need, and depend on for ourselves and our families, we’ll be stuck with the absurd equation of astronomical human cost being the solution to the financial crisis this country is facing.
How will the proposed budget affect you? There have been discouraging predictions from HIV/AIDS leaders and organizations about the impact these proposals may have on those who are HIV-positive. For the purposes of this article, I’m creating and following a fictional man living with HIV as he navigates the whitewater of the things he will no longer have if the most stringent aspects of the budget proposals become law and PPACA is repealed.
Meet Greg. He’s 42 years old, gay, HIV-positive for 21 years, half his life. He works as a peer educator at a non-profit AIDS service organization. He makes $32,000 a year with no prospect for a significant raise any time soon, “too much” to qualify for most assistance programs. His agency provides the supposed “gold standard” of health insurance, but in 2010, co-pays and deductibles rose so much that he can no longer afford to see his HIV doctor, his dermatologist (history of KS lesions), his podiatrist (neuropathy), or his hepatologist (hepatitis C and alcohol-induced cirrhosis) as often as he should, as each visit to a specialist requires a $40 co-pay, which equals over half his weekly food budget. The blood work he’s supposed to get regularly is sometimes postponed. The drug co-pays for his HIV meds also rose to the point where he now relies on ADAP for his meds, but the ADAP in his state is beginning to enact “cost containment” measures that might disqualify him from eligibility. In the last year, he has acquired $14,000 of medical debt due to the 10% of costs his insurance doesn’t pay, as well as treatments it doesn’t cover, such as dental work and “cosmetic” treatment for lipodystrophy. He’s getting by, but barely.
Then, in 2014, the agency he works for shuts down having lost the federal funding it relied on to stay open. Unemployed, with no income, he starts looking for help to stay connected to his HIV treatment and medical care, as well as to find a place to live, since he had to give up the apartment he had when he was working. He is currently staying with his brother’s family, sleeping on the living room couch, dealing with his sister-in-law’s bigotry and the incessant noise of nieces and nephews. Still, he’s grateful for the roof over his head and the meals he shares there.
Closed for business
Greg thinks that he may be able to qualify for Medicaid now that he’s unemployed and has no income. Because Republicans were able to repeal the ACA in 2012, the provision that would expand Medicaid to cover people like him no longer exists. Instead, thanks to a Republican budget balancing measure, Medicaid in his state now only receives a block grant from the federal government. The amount of that grant is not sufficient to cover the portion of the state’s costs that used to be covered by federal money and the state is still struggling with a weak economy. So, not being able to pay its share of the Medicaid costs, it has chosen to cut Medicaid eligibility and services. When Greg applies for Medicaid, he’s told that, as a first-time applicant, he will be “phased in” as doctors and services become available. How long will it be before he can see a doctor? No one can (or will) tell him. 2011 predictions from the Congressional Budget Office in its assessment of Paul Ryan’s budget proposal have proven to be true—“the large reduction in payments would probably require states to decrease payments to Medicaid providers, reduce eligibility for Medicaid, provide less extensive coverage to beneficiaries, or pay more themselves than would be the case under current  law.”1
Greg, ever the optimist, thinks he can bridge the gap while he waits for Medicaid by going to a community clinic near his brother’s house. Well established for over 20 years, he’s heard of the good work the clinic does serving homeless and poor patients. He takes a bus to their location only to find wood covering the windows and a sign on the door informing him that “due to insufficient funding, the clinic was forced to close. If you are having a medical emergency, please go to the nearest Emergency Room.”
Was he having a medical emergency? He wasn’t bleeding, having a heart attack, suffering from a gunshot wound, had no broken bones (that he knew of). How much of an emergency was it that every day he went without his medications he could almost feel the HIV replicating inside him and his T-cell count plummeting?
Back in 2011, Senator Daniel Inouye of Hawaii stated that the Republican plan for the budget would “close 127 clinics in 39 States (and two territories) and reduce services at another 1,096 Community Health Centers nation-wide. More than 2.8 million people would likely lose access to their current primary care provider and over 5,000 health center staff could lose their jobs.”2
In contrast, President Obama’s 2012 budget proposal would have included
$3.3 billion for the Health Centers Program, including $1.2 billion in mandatory funding provided through the Affordable Care Act Community Health Center Fund.
“The infusion of funding provided through the Affordable Care Act, combined with the discretionary request for FY [fiscal year] 2012, will enable health centers to serve 900,000 new patients and increase access to medical, oral, and behavioral health services to a total of 24 million patients,” the Health and Human Services budget proposal stated.2
But the Republicans were successful in de-funding and repealing any part of the Affordable Care Act that would have benefitted anyone like Greg who was counting on help from programs and resources that now no longer existed.
Fast forward to 2019. Greg is now 50. After his brother lost his job in 2015, Greg lost the roof over his head and the food his family shared with him. After spending a month in a shelter where he was beaten, raped, and had the few meager possessions he still owned stolen, Greg found himself on the street. He had not taken any antiretrovirals in over two years at that point and he instinctively knew that HIV and opportunistic invaders had claimed him once and for all. His last thought before the light went out of his eyes was to wonder if the politicians would be happy—he was, after all achieving the ultimate cost cutting measure.
Dead at 50. In America. Needlessly. His exposure to the elements, his lack of even substandard nutrition, repeated respiratory infections, infestations of bugs and bacteria from not being able to clean himself, a broken arm that was never set and so healed incorrectly, all conspired to lead the medical examiner who did his autopsy to conclude that severe sepsis was his cause of death. HIV was, ironically, the least of it.
According to a 2010 study done by the advocacy group Families USA, 68 adults under age 65 living in America die every day because they don’t have access to medical care. The study projects that the figure will climb to 84 per day by 2019, the year of Greg’s death.3
However, according to The Wall Street Journal CEO Compensation Study, “The median CEO pay [per year] in the [health insurance] industry was $10 million.”4 Evidently, they don’t have to worry about not being able to pay for their own health care.
Trying to imagine all the “Gregs” out there, male and female, HIV-positive and not, who have been, or will be, shut off from the care, treatment, and services they need if the proposed cuts are passed is an impossible task. Are you one? Is someone you love or work with or worship with one?
Whether you will be directly affected or not, this is something we all have a stake in. And it’s not just the Medicare/Medicaid cuts that we should be knowledgeable and concerned about. There are environmental, educational, and infrastructure cuts that, if put in place, will leave us with polluted air and water, substandard and restrictive education, and roads, bridges, runways, and tunnels that are also life-threatening. All in the name of money...well, middle class and poor money, anyway. The budget protects the money of the wealthy, maintaining tax cuts for millionaires and billionaires and tax “breaks” for corporations which frequently pay no taxes at all.
Is that who we are? Is that what our country is? What can we do? Each of us must decide for him or herself just how much energy and time we spend learning, communicating, and acting. What we cannot, must not, do is sit on the sidelines telling ourselves, “Oh, it’ll be OK. Someone else will take care of it. There’s really nothing I can do.”
Many of you have had the courage to “come out”—about your sexuality, your HIV, your politics, your religion. Now it’s time to come out of your complacency. Don’t be Greg.