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HIV/AIDS and the Fight for Universal Health Care: Bridging the Movements

May 1, 2007

6:30 - 8:30 PM, The LGBT Community Center, New York City

Nearly 50 million people in the United States do not have health insurance in our current for-profit, employer-based insurance system. The fight for a single-payer national health program draws on theories of social justice to advocate for health care for the poorest, the sickest, and the uninsured. What is the relationship between the fight for HIV prevention justice and the broader climate of health care in which we live? How do both HIV/AIDS activism and universal health care activism address issues of affordability and access to essential health services, resources and education?

Rebecca Fox, The National Coalition for LGBT Health
Ajamu Sankofa, Healthcare-Now!
Eustacia Smith, ACT UP/New York
Moderated by Joseph DeFilippis, Queers for Economic Justice

ACT UP/New York
Community HIV/AIDS Mobilization Project (CHAMP)
Gay Men's Health Crisis (GMHC)
The LGBT Community Center
Metro New York Health Care for All Campaign
Physicians for a National Health Program-NY Metro Chapter
Queers for Economic Justice

Summary of Discussion

Welcome: Joseph DeFilippis, Queers for Economic Justice

I will start with a few basic facts to help frame this discussion. Depending on the report, between 48 and 82 million people lack access to health insurance in the United States. One-third of uninsured people live in 18 states. In New York State, one-third of the population is uninsured. The United States is the only industrialized nation that does not have a single-payer health system (28 have it).

Universal health care is not a utopian idea; rather, it is totally doable since everyone else does it. It is important for activists to debunk arguments against and dispel myths about national health insurance.

We really need universal access to health care, because the health of the nation is so poor. The United States ranks 20th in life expectancy for women, 21st in life expectancy for men, and 67th in terms of immunizations.

It is crucial to debunk the myth that universal health care is too expensive. The United States spends 40% more per person on health care than any other industrialized country. In fact, a federal study -- that is, a report from our very own government -- finds that universal health care could save $100 to $200 billion per year.

Citizens of countries with a national health care system have more access to health care. Those people have more doctor and hospital visits. This fact disproves the argument that establishing a national health plan in the United States would create a bureaucracy that limits access. The experience of other countries tells us that this is just not so.

Access in the United States is determined by a person's race and class affiliation, but in nations with universal health care, such programs level the playing field somewhat.

Staci Smith, ACT UP/New York

Staci has been an activist for about 15 years, with work focusing around queer issues, Palestine, housing and homelessness. Staci is on the board of Health GAP, has worked at an AIDS housing facility for the formerly homeless, and has been an active organizer in ACT UP/New York for ten years.

On March 29, 2007, ACT UP/New York organized an action in conjunction with its 20th year of existence. ACT UP/New York decided to take on the issue of single-payer health care as an ongoing campaign and to use the anniversary milestone as a kick-off for it. ACT UP/New York worked in coalition with Physicians for a National Health Plan and other groups to organize a march on March 29th. Hundreds of people turned out at the United States Federal Building and marched to Wall Street, where they stopped to talk about corporate greed and to target insurance and pharmaceutical companies. They also stopped to commemorate those who have died of AIDS along the route of the march. The march ended at the bronze statue of the bull at the foot of Broadway (at Bowling Green) in downtown New York City, as they believe that the bull is the symbol of corporate greed.

At the bull, there was an act of civil disobedience. Twenty-seven people went into the street, laid down and were arrested, including activists associated with Housing Works, ACT UP/New York, some doctors and others. It was great that doctors got out there -- their presence served as recognition of health and the importance of single-payer health insurance to promoting health.

Why did ACT UP take this issue on as a campaign? One reason is the statistics. It is startling that 18,000 people die of AIDS each year in the United States. That's 50 people every day, and this is likely a conservative estimate.

Every other industrialized country including South Africa has a national health system except the United States. Instead, our system favors insurance companies -- and the insurance industry ensures that this remains the case.

A significant portion of every health care dollar goes to overhead rather than to health care. The high cost of health care affects people living with HIV/AIDS (PLWHAs) as well as HIV prevention efforts.

A single-payer system is different from the concept of national health care. A single-payer system is a system to make sure everyone has health care. Think of it as expanded Medicare. A single organization would coordinate insurance and make sure everyone has care. There still would be private providers, and it would not be socialized medicine.

Although there are programs to provide medical services to PLWHAs, they are not adequate. ADAP -- the AIDS Drugs Assistance Program -- has long waiting lists, and many people fall through the gaps and get no coverage under ADAP. HIV medications cost, on average, $15,000 per year. Doctor's bills add more. In other countries, people pay much less for the same name-brand drugs; but in the United States, there is no system of drug pricing controls.

In the United States, 250,000 people do not know that they are HIV-positive. These persons are more likely to engage in unsafe and risky behaviors than those who do know their status. Every year, there are 40,000 new infections, and many of these new cases might be influenced by the fact that so many people don't know their status.

According to the Kaiser Family Foundation, 160,000 PLWHAs are uninsured. The National Institutes of Medicine report that 250,000 PLWHAs have no consistent access to antiretroviral therapy even though they have a clinical need for it.

A single-payer system would increase the opportunity for education and testing. Treatment reduces viral loads in a PLWHA's blood. With a national health care system, more people would get tested earlier and treated earlier and prevent illnesses that they don't have.

In the 1990s, however, ACT UP was part of a successful campaign on international drug access and pricing. People could get medications in the United States, but not in poorer countries where HIV/AIDS is expanding.

Activists targeted Gore and used international access to HIV medicines as a wedge issue to highlight the high cost of HIV drugs to developing countries. AIDS activists went to Tennessee where Gore announced his candidacy. They had messages on T-shirts and whistles, chanting, "Gore's greed kills AIDS drugs for Africa!" On the second day, another group went to New Hampshire and executed the same action. These activists unfurled a banner behind Gore while he had live media coverage.

They continued to carry on this campaign and follow Gore around while he made campaign appearances. It was successful because the press was already there. Therefore, activists today need to find opportunities when the press is already there. Using such strategies, we can accomplish huge things. Now we are coming up to election season, so it is a prime opportunity. Candidates want to avoid arrests because they do not want the bad press of their audiences seeing people hauled away in handcuffs.

A small group of people showing up repeatedly and consistently works.

No more bull in AIDS health care now! We can create an environment where we can talk about these issues.

Many people are fed up with insurance companies. Don't assume that Democrats are on our side. Senator Clinton is second only to Senator Santorum (R-PA) to receive industry donations. So, activists should not just go after Republicans.

Rebecca Fox, The National Coalition for LGBT Health

The National Coalition for LGBT Health is a US-based coalition with over 50 organizational members, who shape its agenda. A focus for us has been Healthy People 2010, which specifies federal priorities around health care and seeks to eliminate health disparities. But there is no mention of sexual orientation or gender identity in it. In response, we put together a document about LGBT health care and health indicators. It is on the Coalition website:

At least in some form, universal health care will happen. Fox worries that the system will be like the one in Massachusetts, where, if you do not purchase health insurance, the state will fine you -- even if you spend your income on basic necessities like rent or childcare.

In Prince Georges County, a young boy died because he did not have access to dental care. A mother made a choice to have one of her children's pressing dental issue dealt with, while deferring the care for another who had a small toothache. As it turned out, the child with more minor pain developed a brain abscess and died.

The media sets the agenda. The Washington Post talks about infant mortality in the South and all of a sudden people talk about it. Polls show that 60% of people would pay more taxes and 80% would pay more out of pocket to have health care.

The Democrats are talking about it. Every major candidate talks about the issue, even if they do not have a particularly good plan. But, at least they talk about it. On the other hand, Giuliani has chosen health care as an issue to make him more conservative. He accuses the Democrats of moving towards socialized medicine. The fact that Giuliani engages in these rhetorical attacks is a sign that the candidates use health care as a wedge issue.

Whoever is in charge of the government sets the agenda. When conservatives are in power, family planning clinics and reproductive services including abortion services are cut.

LGBTQ people are not counted in the health system. No health survey counts LGBT people. Most think of us in terms of Will & Grace, that is, that we're all white and healthy. The reality is that LGBTQ folks are more likely to be uninsured or under-insured. And for transgender health care coverage, there is often nothing.

The fear is that we will get a single-payer system, but without explicit provision for LGBT people (that addresses the spectrum of sexual orientation and gender identity). Our health care system generally does not address our community and our lived experience. Will your doctor know to talk to you about anal health, for example? Will you be able to access certain types of care, such as fertility banks? Will your partner be recognized as an equal parent or not? What kind of system will be in place for training of health care providers to deal with LGBT health?

All insurance companies have a transgender health care rider. Surgery and hormone pills are not the only issue, because everything is included in this sort of provision. For instance, an insurance company would not cover a transgender woman who broke her arm in a softball game. The insurance company said that if this individual had not become a woman, she would not be playing on a lesbian softball team. So, there is no transgender-inclusive health insurance. One can't even buy it. If a company wants to cover transgender health care, they just have to pay for it out of pocket.

We should be concerned about transgender health -- this group may not have health care at all if the wrong administration ends up devising a single-payer, national health care system.

Ajamu Sankofa, Healthcare-Now!

The campaign to pass HR 676 is part of a heritage of class struggle and antipoverty legislation, and it is arguably the most important anti-poverty effort since the Social Security Act.

The subtext here to emphasize is that we are dealing with an assault on fundamental democratic rights in this country by limiting access to health care. We can't underestimate how important this is.

75% of Americans wanted a national health care system 60 years ago. So, this struggle is not new.

Now we are dealing with propaganda of pharmaceutical and private health insurance industries that bombard us with slick messages aimed at a population they believe is insular.

The struggle for health care creates a profound opportunity -- an opening -- to deal with other human rights issues like education, voting rights, and immigration issues.

He disagrees in a friendly way that a national health care system is inevitable. We have the Iraq War even though we had the biggest demonstration in history and the facts on our side. But it doesn't matter if we have the facts on our side. Rather, we need to learn from the tactics and organizing used by folks who got the 40-hour workweek and those that defeated Jim Crow in order to win universal health care.

Social Security is a great model for a single-payer system. Such a system is to be funded by progressive taxes, and people pay into a huge pool. There would be no co-pays for an individual seeking health care. HR 676 pays for all health care regardless of one's citizenship, and therefore, it is a fundamental recognition and extension of human rights to health care.

Hillary Clinton and Barack Obama have not presented a plan; rather, what they have offered is the rhetoric of a hybrid system. Their proposals preserve the insurance industry by mandating employers to insure their workers. The problem is, if you keep the insurance industry in the system, health care costs would rise. We need to kick it to the curb.

Websites to check out:

These sites contain lots of information and statistics about various populations who cannot get health care.

Summary of Questions and Discussion:

Question: You mentioned that there are candidates we can pressure; who is vulnerable to pressure and what is out there for them to respond to?

Sankofa: Kucinich has a position on HR 676, the bill number for the expanded and improved Medicare for all bill submitted by Rep. Conyers, who is the head of the judiciary committee. The bill simply expands Medicare to everyone who is here in this country (defined as someone who intends to stay and has been here for two months). It also includes folks who are visiting. It would cover all drugs, long-term care, and mental health care. For LBGT people, there would be a national board to be created to ensure quality, and the criteria for the board include mandates to reduce health disparities. The scope of health disparities also includes sexual orientation.

Edwards came up with a hybrid plan. He is trying to do a more current version of Clinton's old plan that tries to keep insurance in there. Access, quality of care and health care costs are the three big issues. A single-payer system is the only way to extend care to all people.

Fox: It is great that sexual orientation is in there, which a great step forward for us. But it worries me that gender identity is not. There are lots of crazy MDs who only prescribe contraception to married women or who preach their Christian values to their patients. What happens if this is the only MD you have access to? It is worrisome when the government steps into our lives via health care; hence the need for a mechanisms to ensure equality for all.

Smith: Hillary is a great target. She is vulnerable because of her association with health care companies. Activists set the agenda for media and that is what we have to do.

Question: What are your fears about government control of the health care system; what is that about?

Fox: My background is reproductive rights and their relationship to health care. There are rules that prohibit talk of abortion and the ultimate effect of that sort of rule is to effectively close down the clinics. The first thing the first Bush did was to institute a global gag rule and Clinton took it away. My worry is that a national health system would be put in place that the right wing would remodel when they take over. For instance, defining children's health changed from birth through 19 months to conception through 19 months. That small change is that it makes a zygote a person whose value is elevated above a woman. So, if a woman gets cancer and needs treatment, it is not in the fetus' best interest to get chemotherapy. Therefore, the woman is not covered and the fetus is. When and if a system is created, we need to figure out how to prevent such ideological changes.

Comment: When evaluating candidates, what is their history around health care issue? For instance, Romney, the leading Republican candidate, brought in a hybridized universal health care system in Massachusetts that has lots of problems. One problem is that if an employer does not provide coverage and the employee does not qualify for a public plan, then it's the individual's responsibility to buy private insurance. If the individual doesn't do so, he or she will be penalized when filing state income tax.

Comment: Giuliani tried to privatize the public hospital system in New York City. He tried to get the government out of the business of providing health care.

Comment: Obama chaired the health committee in the Illinois state system and proposed development of a universal health care system in Illinois.

Comment: Examining a candidate's background does not necessarily tell us what they would do as president. Rather, we should consider their background as a tool to feel out their position.

Comment: Besides activism pressing for universal health care, the biggest impetus for it is that health care is now so expensive for business. Business wants to save money. Underfunded public health systems in other countries have cost-saving policies like no intensive care above age 65 or dialysis over age 70. We should be wary of the impetus to save money and not maximize health care.

Comment: HR 676 has been around for a while, and there is a consensus that it is the way to go. We should not waste time asking for candidates to come up with another plan. We should instead ask them for their position on 676.

We have an inadequate understanding of two things -- what public health has done for us over the last two centuries, such as improvements to health following better sanitation, attention to safety, and managing the environment. No one wants to acknowledge that we have had it for years and we have benefited from it. We should always highlight this when advocating for universal health care. We also need to look to universal health care systems that truly work. England is an easy target because the system has not been fundamentally updated since 1945. France, on other hand, for the last several years has the best universal coverage (according to the WHO). This is because there are several competing not-for-profit companies who provide coverage. Bargaining among them has cut prices. Quality of care and access is set and regulated by the government -- it works.

Comment: As transgender and LGB persons, a single-payer system is necessary but not sufficient. It is essential that the LGBT community have a seat at the table. We need to attend events about universal health care and advocate for our issues. We need to go to candidate forums to talk about our needs specifically. If the health care system is under government control, then everyone is in it, so everyone has a stake in making it work. We need Medicare with universal health care in it, so the lower class is not ghettoized and ultimately left out. We all need to have a stake in the single-payer system. In the United Kingdom, the bottom 1/3 enjoys better care than top 1/3 in the United States. Profit in medicine is a tremendous waste; why does rest of world do better than us? We need to make this issue equitable.

Sankofa: Be careful when citing the history of public health, because its history is not always great -- for instance, that system denounced a whole category of human beings: African Americans. A single-payer system won't happen unless you make it happen. We need to be engaged at every level of this discussion if we want to win.

Comment: Obama knows the single-payer issue as well as any other politician, but he says things that indicate that insurance companies will stay in. Unless we try to change the debate we will be stuck with this system

Comment: Activists can drive policy. What should happen to the insurance companies if a single-payer system comes in? What happens if insurance companies are transformed from for profit to nonprofit? There are think tanks that work on this.

Sankofa: If a single-payer system were established, there would be lots of people out of a job. Recognizing this, 676 has provisions offering two years with unemployment insurance. Job training would be offered and the first jobs available would go to those who participated in it.

Smith: I want to mention a fear that people bring up when discussing this issue. What will happen to medical research?

Sankofa: More pharma money goes to marketing and advertising than research.

Comment: This can be an argument for universal health care. A streamlined structure in place frees up resources to do other things like research.

Fox: Often, the research is for things that sell (like Viagra), but not for things that don't sell.

DeFilippis: And, the government funds pharmaceutical research anyway.

Sankofa: Take out the graphs and charts, and instead humanize the issue. Tell us your story. Do you understand what health care insecurity is? There is a subtle constant message that the uninsured aren't worthy of guaranteed access to health care. They are accused of acting out or having excessive mental health issues. In a world where everyone had access to health care no matter what, what would happen if a person lost a job but has the security of knowing that health care is assured? What would happen if a person lost a residence? Well, one would at least have the health to find a new house.

Comment: Some sort of single-payer system is something we will probably win; however, what happens if it is not quite sufficient? What happens if we only get 30% of what we demand? LGBT agendas specify what health care would be good and sufficient. What leverage do we have in already organized people that have access? Also, I wonder if people hate drug companies more than they hate insurance companies.

Fox: What we have in the United States is a good system in which we get a little and feel satisfied, even though not everyone is addressed or has their needs covered. The LGBT community has a base of LGBT people who work inside the big organizations. They need to come out and say it. Transgender people have come out to say they and/or their partners are not covered. It is important to have those conversations with mainstream organizations. We need to come out and urge that.

Sankofa: The pharmaceutical industry can remain robust with drug pricing controls, but health insurance must go.

Smith: Don't let people get away with saying they support universal health care. They have to say that they support a single-payer system.

DeFilippis: People want health insurance because it is the only way to get health care -- not necessarily because they like health insurance companies.

Comment: There is a value issue with universal health care. Even the archconservative Washington Times supports a single-payer system, but claims that it is untenable because government-subsidized health care does not conform to American values.

Fox: Everyone believes what he or she read in newspaper, but we need to interrogate statistics because they don't reveal whole story. We should not focus on statistics that are presented as facts, but instead on the paragraph underneath the presentation of statistical data that that explains why something is so.

Comment: In a market-driven economy, ideas directed towards health and human services have not worked for humans but for the institutional investment of health insurance companies and people providing care. It is our right to say that we should have access to health care.

Comment: Social and economic rights are not part of the discourse on human rights in the United States. If we do not talk about full human rights and then exclude LGBT, immigrants, and transgender people, the human rights language highlights this and offers a way for these movements to come forward.

This article was provided by Community HIV/AIDS Mobilization Project.
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