April 20, 2012
April 17th, 2012 was Tax Day as well as Equal Pay Day (read Teresa Sullivan's Wage Gap blog), a day established to bring attention to the pay gap for women in the U.S. For many women living with HIV, Tax Day brings home the truth that regardless of a woman's financial status, an HIV diagnosis is frequently a sentence to a lifetime of poverty.
Is the American Dream of life, liberty, and the pursuit of happiness really achievable for HIV-positive women?
As a young woman living with HIV I am fortunate to be employed and fortunate to have healthcare through my employer. However, what happens when I change jobs or become unemployed? What happens if I decide to pursue school? What happens if I move to a different state? What happens when I am 60 years old and celebrating 40 years of living with HIV? How many tens of thousands of dollars will I spend on medical care in my lifetime? How many different networks of care will I have gone through? Do I compromise on the right to have a dream -- to live by the seat of my pants and jump for opportunities -- in order to have stable healthcare? These are only a few of the questions that many HIV-positive people, especially women, confront each morning.
HIV is a lifelong, chronic disease. It does not have to be a disease of crisis, despair, and shame. Yet, it is. It is because HIV runs the well-worn path of gender inequality; where race, gender, and geography are risk factors for acquisition. It is because we lack the investment in each other as human beings to pursue our dreams, to foster families and communities that can thrive.
64% of women living with HIV receiving medical care had annual incomes under $10,000 compared to 41% of men, according to the HIV Cost Services and Utilization Study.
People living with HIV are incentivized to stay poor. Benefits programs including ADAP, Medicaid (read Kat Griffith's Medicaid Surveillance blog), and housing programs require an HIV-positive person to keep her income below a certain level to qualify for benefits -- in some states, an individual must earn less than $1,200 a month to qualify for the AIDS Drugs Assistance Program. If a woman attempts to earn more money to take care of herself and her dependents, she may run the risk of losing her health care and supportive services.
People living with HIV are incentivized to get sick. Some programs require an AIDS diagnosis to qualify for and stay in care or housing. Instead of investing in preventative and long-term care, some programs like Medicaid require a disability diagnosis before care and medication are dispensed. This means HIV-positive people may have to get severely sick and disabled before seeing a doctor or receiving medication.
Our system is broken. How can people living with HIV be productive tax-paying members of society (read Precious Jackson's Economic Growth blog) when healthcare and workplace policies consistently disenfranchise and threaten to disenfranchise us? For many women living with HIV, the attempt to build a savings, the thought of accumulating more educational degrees, and the effort to plan for future security does not always protect us. One fatal illness, one encounter with workplace stigma, one discriminatory practice can send us into poverty.
In addition, we as women "carry the heaviest economic burden. We are often responsible for our children, partners, parents and even grandparents and grandchildren," says PWNer Nicole Seguin, a powerful advocate and HIV-positive mother (read her blog on the Glass Ceiling).
Women are key ... women are central ... no, women are already turning the tide against the HIV epidemic both in the U.S. and globally. But how can we sustain turning the tide when we are pushed into poverty and discouraged from pursuing our dreams? Women have a right to work and a right to earn a living wage, while having access to high-quality healthcare to make the American dream a reality.
To achieve this dream, federal and state governments along with the private sector must support the full implementation of the Affordable Care Act (read Brook Kelly's blog on how health care reform supports HIV+ women). Health care reform has the potential to expand the Medicaid program and get rid of the disability requirement, bring down costs, prohibit health insurance discrimination against women and people with pre-existing conditions, provide better health security, and create a better system that meets women's unique needs.
To achieve this dream, government bodies and the private sector must fulfill all people's right to work by funding and supporting skills-building employment and education programs such as those that work to transition incarcerated people into health care systems and employment upon re-entry into their communities.
To achieve this dream employers, government bodies, and worker's rights movements must continue to ensure equality and equity of pay in the workplace, actively enforce the Americans with Disability Act (ADA), and incentivize the training and hiring of HIV+ women in the workforce.
We as women living with HIV demand to be counted in the American Dream. I have a dream and it will not accommodate discriminatory, oppressive, and degrading policies!
Sonia Rastogi writes from Oakland, Calif.