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A User's Guide to Health Care Reform

What's at Stake in National Health Care Reform for HIV-Positive People and What You Can Do About It

January/February 2010


Are you confused by the politics and provisions of national health care reform? If so, you're not alone.

As Positively Aware goes to press, the U.S. Senate vigorously debates its version of health care reform legislation. Passage of national health care reform would be historic, promising dramatic changes in the ways people with HIV/AIDS gain access to and afford their health care.

Unfortunately, people across the U.S. find it increasingly difficult to keep up with rapidly changing legislative drafts, the myriad reform provisions under consideration, and the political tug-of-war. For too many people, the debate is downright confusing and discouraging.

The following sections provide a framework by which to understand the debate, links to obtain the latest news and analysis, and advocacy tips to promote the strongest possible provisions for people living with and affected by HIV/AIDS.

We must raise our voices to ensure emerging legislation responds to the unique needs of people with HIV and helps put our nation on a path to end the epidemic.

What's in It for People With HIV/AIDS?

Unequal access to health care and preventive services helps fuel the HIV epidemic. Despite significant medical advances, our best estimates show that an astonishing 500,000 HIV-positive people -- 50% of all those living with HIV/AIDS in the U.S. -- do not receive regular medical care. Nearly half of all people with HIV live on less than $10,000 a year. Unemployment rates are 10 times higher among people with HIV than in the general population. One-third of all people with HIV/AIDS are uninsured (twice the percentage for the general population).

Health care inequality and stigma result in late testing. Too many people diagnosed with HIV are either simultaneously diagnosed with AIDS (29% of newly diagnosed) or receive an AIDS diagnosis within 12 months (39%). And still one in five people with HIV remain unaware of their condition. An unacceptably high number of people -- 56,000 -- become HIV-infected each year.

Comprehensive reform could address many of these staggering statistics. With adequate reform, more people could receive voluntary HIV testing services and more people with HIV could gain access to the health care and support services they need to improve their lives.

Put simply, comprehensive health care reform could transform the fight against HIV/AIDS by accelerating efforts to link more people with, and at risk for, HIV to the health care services they need.

Overarching Approach to Health Care Reform

Leading bills in Congress start from a position of building on existing health care systems in the U.S. That means lawmakers have rejected a wholesale restructuring of the health care delivery and financing system -- such as single payer models -- and seek instead to reform private insurance markets (both group insurance and individual plans) and expand Medicaid and Medicare benefits in order to reduce the number of uninsured people, while strengthening benefits for those currently covered.

A central provision in both House and Senate legislation would establish new requirements mandating that most people carry health insurance coverage and most businesses provide group insurance for their employees. The federal government would play a larger role in helping low- and moderate-income individuals obtain coverage, including the provision of new subsidies and insurance spending caps (calculated on a sliding scale) to help moderate-income individuals afford coverage.

The Role of Medicaid

Medicaid is the nation's safety-net health insurance program, providing coverage to 59 million low-income people who are disabled, elderly, pregnant, underage, or meet other criteria.

States finance and implement Medicaid programs with matching federal funds. Given wide variability in state-level leadership and investment, Medicaid varies greatly across the country. An estimated 350,000 HIV-positive people rely on Medicaid to access health care services.

Proving disability (i.e., too sick to maintain gainful employment) is the primary way low-income people with HIV obtain Medicaid benefits. Tragically, the disability requirement puts people with HIV in a cruel Catch-22: their health must deteriorate to the point of disability in order for them to qualify for assistance in obtaining the very medications that could have prevented the onset of disability in the first place.

Provisions in health care reform legislation would end this tragic Catch-22 and expand and simplify Medicaid to cover millions more low-income people.

The House-passed bill would expand Medicaid for all low-income individuals and families at or below 150% of federal poverty (about $16,000 annual income for a single individual and $33,000 annual income for a family of four). More than 100,000 people with HIV could obtain health insurance coverage under Medicaid expansion alone.

While expanded Medicaid coverage would begin nationwide in 2013, states would be allowed to expand coverage immediately for low-income, non-disabled people with HIV. The federal government would assume a higher share of the costs for the preliminary expansion period (for those states that elect it), as well as for full Medicaid expansion beginning in 2013. Some 11 million uninsured, low-income people, including childless adults currently excluded from the program, would become eligible.

Another important Medicaid provision only in the House-passed bill would gradually increase provider reimbursement rates until they reach more generous Medicare levels. Without this provision, low-income people might find themselves with health insurance coverage that is difficult or impossible to use because health care facilities and providers cannot afford to accept Medicaid-covered patients. Meanwhile, the Senate is debating Medicaid expansion -- slated to begin in 2014 -- for citizens with incomes at or below 133% federal poverty (about $14,400 annual income for a single individual and $29,000 for a family of four). Sadly, the bill does not contain the provision allowing states to expand HIV coverage immediately.

Neither the House nor the Senate bill establishes a comprehensive minimum benefits package for Medicaid programs, which is likely to perpetuate wide Medicaid variability (in all aspects including quality) across the U.S.

Consumer Protections

House and Senate legislation would prohibit insurers from denying coverage or basing premium rates on gender, health status, or pre-existing conditions, including HIV. Lifetime expenditure caps would also be prohibited. Insurers would be allowed to set premiums based on age, family size, geography, and tobacco use, within established parameters. These reforms aim to make health coverage more affordable and accessible for millions of people, including people with chronic health conditions.


House and Senate legislation includes provisions to help individuals afford mandated coverage. While specific provisions vary across the two leading bills, and will likely continue to shift as congressional negotiations continue, the basic approach would provide individuals with a sliding scale of subsidies meant to offset the cost of insurance premiums. Subsidies would be made available to individuals with incomes above the maximum for Medicaid and below 400% of federal poverty, or approximately $40,000 in 2009 for a single individual. People with lower incomes would receive more generous subsidies.

The bills would also provide sliding-scale-based subsidies for co-pays, deductibles, and co-insurance. The House bill provides subsidies that cover up to 70-90% of cost-sharing, depending on income, for people with incomes up to 400% of federal poverty. The Senate bill provides less assistance of this kind -- it would cover 80-90% of cost-sharing for people with incomes up to 200% of federal poverty. While important, neither bill goes far enough to cap costs for people with chronic medical conditions. At the higher income levels that still qualify for subsidies (i.e., people earning annually $35,000 to $40,000) the combination of premiums and co-pays (assuming a person reaches his/her annual cap on cost-sharing) could still amount to $11,000 to $12,000 annually for health insurance costs.

The Exchange

House and Senate legislation would establish a new way for uninsured individuals to shop for health insurance. The so-called "exchange" would review health insurance plans against government standards and promote qualifying plans to prospective beneficiaries. Proponents forecast lower costs for consumers by standardizing and simplifying plan options and linking millions of prospective purchasers to companies selling insurance.

The House bill includes a national health insurance exchange. By contrast, the Senate bill proposes state-based exchanges. By influencing a greater share of the insurance market, a national exchange may likely go further in controlling costs than state-based exchanges.

Public Option

The House-passed bill would establish a public insurance option that would compete against private insurance plans in the exchange for prospective insurance clients. A public option would offer people with complex health conditions, such as HIV, high-quality coverage for a competitive price. While unsubsidized by the federal government (claims would be paid strictly with collected premiums and co-pays), the public plan would likely spend less on operating and administrative costs and would not need to generate dividends for shareholders. An added benefit of the public option is to motivate private plans in the exchange to hold their costs to the levels of the public option or lose market share.

A strong public option is especially critical for people receiving shallow insurance subsidies or no subsidies at all. For people with incomes above $35,000, the public option is likely to provide the most affordable coverage and help contain costs for all plans in the exchange.

The House adopted legislation that took a bold step by including a national public option, considered most likely to control costs nationally and ensure people across the U.S have at least a high-quality plan available to them in the event private options are inadequate or too costly.

The Senate is expected to revise current legislative provisions establishing a national public option in each state exchange, unless barred by state law.

The Role of Ryan White

Since 1990, the Ryan White CARE Act has provided medical and support services for people with HIV/AIDS who lack other options. Congress passed and President Barack Obama signed legislation earlier this year continuing the CARE Act program until 2013. Health care reform legislation would require health plans to coordinate with Ryan White medical providers to ensure the availability of HIV medical specialists.

Comprehensive health care reform could transform the fight against HIV/AIDS.
Despite expansion efforts, neither bill in Congress would cover the full array of essential support services that help people with HIV/AIDS gain access to and benefit from care. Moreover, neither bill is expected to achieve universal health coverage in the U.S. Therefore, the Ryan White safety net will continue to be needed by some HIV-positive people who, despite health care reform, continue to lack access to medical services. In addition, its role in support services is likely to expand under health care reform.

The one program that could likely see significant changes is Ryan White's AIDS Drug Assistance Program (ADAP), which provides HIV-related medications to individuals who have no other way to obtain lifesaving HIV treatments. Health care reform could significantly decrease the number of people who turn to ADAP for their HIV-related medications, and that would be a good thing, as the need for the program is currently outstripping available funds. At this writing, 342 people languish on ADAP wait-lists across the country. The dire circumstances of ADAP are likely to get worse in 2010.

The Role of Medicare

Medicare is the nation's health insurance program for an estimated 38 million retirees and disabled workers, including an estimated 100,000 people with HIV. Medicare is the federal government's single largest payer of HIV care followed by Medicaid. Most non-elder people with HIV on Medicare qualify as a result of becoming disabled after a two-year wait period.

Medicare's prescription drug benefit -- known as Part D -- is particularly complex. Most beneficiaries (with the exception of the low-income people who qualify for Medicare subsidies) assume a share of their annual prescription drug costs until their total annual expenditures exceed $3,600, after which the benefit covers 95% of prescription costs for the rest of the year. The out-of-pocket costs are especially steep for beneficiaries when their medication expenditures reach the so-called "donut hole" during which 100% of medication costs (up to nearly $3,000) are paid out-of-pocket by the beneficiary.

The House bill includes two important provisions to remedy this problem: first, medication expenditures paid by ADAP on behalf of a Medicare beneficiary would count toward the individual's annual cost-sharing requirements. Second, the House bill gradually eliminates the donut hole over time.

The Senate bill does not go as far as the House. While it would allow ADAP expenditures to count toward out-of-pocket limits, it would still subject Medicare beneficiaries to thousands of dollars in uncovered medication costs each year.

Other Important Provisions

The House bill includes a controversial provision that essentially restricts coverage for abortions in the vast majority of health plans, whether paid for with federal subsidies or not. The Senate provision would restrict federal funds from abortion coverage, an extension of current law. Reproductive health and AIDS advocates will be closely monitoring negotiations on this provision to protect the reproductive rights of low-income women, including women with HIV/AIDS.

In addition, each bill includes provisions to enhance health and wellness services, including provisions to prohibit co-pays for preventative screenings, new Medicaid and Medicare requirements, and grants for public health and community-based prevention services.

Finally, myriad other provisions under consideration would help increase the supply of qualified health workers, collect better demographic data on insured individuals, and extend the same tax benefits to health benefits of same-sex partners as offered to spouses.

More Information

Congress needs to hear from you now about your current health care challenges and your aspirations for national health care reform. Stay up-to-date and learn how to amplify your advocacy voice by visiting the links below.

Treatment Access Expansion Project (TAEP)

AIDS Foundation of Chicago

Project Inform

Side-by-Side Legislative Comparison

Health Care Reform Advocacy Toolkit

Media Talking Points

Health Care Stories (and Nightmares) by HIV-Positive People

David Munar, Vice President of the AIDS Foundation of Chicago, is a local and national leader for sound public policy on HIV/AIDS. A person living with HIV, Munar serves on the board of directors of the Pediatric AIDS Chicago Prevention Initiative and the AIDS Action Council, chairing its Policy Committee. He is active on advisory committees with the Centers for Disease Control and Prevention, the Health Resources and Services Administration, and the National Institute on Allergies and Infectious Diseases. In 2007, Munar worked with other AIDS advocacy leaders to form the Campaign for a National AIDS Strategy, and remains involved with its Coordinating Committee. This year, he worked with the Community HIV/AIDS Mobilization Project and SisterLove to launch the Prevention Justice Alliance. Munar is bicultural, bilingual and a first-generation Colombian-American.

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
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U.S. Health Care Reform