Open Letter to Health Reform Advocates: Pay Attention to Discrimination
The harms inflicted by discrimination reveal themselves in our bodies as we age — as people of color, as poor and low-income people, and as lesbian, gay, bisexual and transgender (LGBT) people. The symptoms manifest as higher rates of high blood pressure, cholesterol, diabetes, heart disease, HIV/AIDS, depression, social isolation and more. In medical charts throughout the country, our bodies record what it means to survive a life shaped by perpetual poverty, higher concentrations in low-wage jobs with no health insurance, thin retirement options and inadequate protections in the workplace. They depict our fractured relationships to health care — from cultural and linguistic barriers to overt bias and discrimination from health and aging providers, to a long-held, hard-earned distrust of medical staff internalized through years of differential treatment.
Our bodies confirm vividly the geographic dimensions of structural inequality, which can predict long-term health as early as childhood, based largely on where a person is born. We inhale the poison of inequality throughout our lives, and it inflames in our later years as a dismal diagnosis, a medical crisis or a preventable death. Yes, severe illness will surprise many of us at some point in our lives, and death is indiscriminate, but as empirical fact, poor health affects certain demographics disproportionately at earlier and higher rates, often the same people with no health coverage to manage the repercussions.
Oct. 1 aims to begin reversing these conditions. The health insurance marketplace established through the Affordable Care Act (ACA) offers opportunities to shop for state health insurance plans and begins improving coverage for the 47 million uninsured people in this country. Millions of people work in jobs with no health coverage, cannot afford insurance on their own and fall through gaps in public support that leave them uninsured or underinsured. Without insurance, people accrue unmanageable debt, delay health care and in turn watch their health worsen over time — a trajectory most often experienced by people of color, LGBT people and low-income people. These hardships intensify for older people who must also contend with age-related bias in the workplace and the challenges of paying for out-of-pocket expenses with meager incomes. An all-inclusive vision of health reform must incorporate the realities of aging as early as age 50.
Advocates are correct in lauding the ACA for striving to improve the health and wellness of people of color, LGBT people and older people in particular. People of color make up half of the non-elderly uninsured in this country, which means that efforts to expand coverage — through the insurance marketplace and the Medicaid expansion — should largely benefit people of color. Additionally, the ACA contains protections that forbid health insurers from denying coverage or charging higher premiums based on pre-existing conditions such as HIV, which disproportionately affects LGBT people and people of color, or based on a person’s sexual orientation or gender identity. Seniors too have seen lower drug costs and enhanced services through the ACA. More broadly, the ACA has enacted large-scale initiatives to reduce health disparities by improving data collection on LGBT people, as well as seeding the Institute of Minority Health, which will improve our understanding of racial disparities in health, a reality pronounced among LGBT older people of color, according to a recent report.
Yet will Obamacare truly tackle these institutional inequities embedded in health care? The outcomes of that question are uncertain. Health analysts estimate that the Medicaid expansions under ACA would cover an additional 13 million people, largely people of color, yet 22 states have currently opted not to broaden Medicaid, which leaves uninsured six in 10 eligible people, according to the Kaiser Family Foundation. Advocates are also encouraging consumers with serious medical problems to proceed with caution when purchasing insurance plans through their state exchanges, which vary significantly across states. For example, people with HIV need plans that cover their current providers and medications at affordable rates. These plans also necessitate careful coordination with AIDS Drug Assistance Programs, yet AIDS advocates are dubious that state plans have undertaken this coordination and are encouraging people with HIV to “slow down” before obtaining new plans. Additionally, some reports suggest that the cost of monthly premiums for some might outweigh the subsidies offered by ACA, which would deny coverage to a percentage of moderate-income people. Finally, it’s unclear whether mainstream consumer health advocates are sufficiently partnering with local organizations rooted in communities of color and LGBT communities to reach those who are most at risk of being uninsured. And have local groups led by and for marginalized communities been sufficiently resourced over time to devise their own outreach and enrollment efforts? The history of philanthropic giving suggests otherwise.
Health reform advocates have a monumental responsibility. We must monitor the state exchanges to ensure that health coverage effectively reaches all our communities, addressing the concerns noted above. Federal leaders could also mandate stronger cultural and linguistic competence requirements in the insurance marketplace and fund organizations based in communities of color, LGBT communities and immigrant communities to ensure appropriate involvement in ACA implementation — especially in states where resources are thin and the politics are charged. Groups working with marginalized older people should be sufficiently resourced and engaged. And perhaps the biggest obstacle lies with states that have opted out of Medicaid, many of which are led by Republican legislatures and rooted in a long history of racial injustice. While short-term efforts should persuade these states to reverse their stances on Medicaid expansion — thus covering millions of people who deserve better health care — the long-term strategy will require health advocates to work closely with communities of color, LGBT people and elders, among others, to counter the mounting neoconservative attack on the social safety net. The attack on health reform is in many ways a culture war.
In her 1980 nonfiction book The Cancer Journals, renowned writer, activist and artist Audre Lorde wrote, “How do I provide myself with the best physical and psychic nourishment to repair past, and minimize future damage to my body?” Lorde was a black, lesbian feminist who died of liver cancer in 1992 at age 58. Her struggle with cancer, memorialized in part in The Cancer Journals, was both personal and political. Her question situates her health experience within the larger historical forces of economic exploitation, as well as racial, economic and gender injustice. Yet Lorde’s question resonates loudly for me this week as ACA outreach and enrollment efforts kick off around the country, because while the health of this country can be diagnosed in part through its lingering disparities and inequalities, it can also be appraised over time by the progress we make to narrow those gaps. American democracy is its own aging body that needs constant nourishment. In order to function, it must focus on its greatest vulnerabilities. It must make better choices and minimize future damage. It must strive to be better than all it has inherited.
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