Care Crusade offers chances to learn about & advocate for new policies
by Chael Needle

The Patient Protection and Affordable Care Act, created by the Obama administration, was passed by Congress and signed into law by the President in March of 2010.

The new law provides for different and arguably better coverage than the old system and more expansive consumer protection for those who are insured.

Insurance does not have an expiration date. No longer can insurance companies place lifetime limits on coverage, meaning that those with ongoing conditions, and, in particular, cancer and other serious and chronic diseases, can rest assured that they will not face limited treatment or be cut off from treatment as insurance runs out. The practice of placing annual limits on coverage will be restricted, as well.

Insurance companies cannot nitpick to revoke coverage. No longer can insurance companies cancel coverage because of minor errors on one’s application. If you are sick and need healthcare, you do not need to worry that one honest entry mistake might mean loss of coverage.

Coverage is extended and expanded for younger family members. Unless offered coverage at work, young adults can remain on their parents’ plan until their twenty-sixth birthday. Also, insurance companies cannot deny coverage to children under the age of nineteen for pre-existing conditions.

Other protections are afforded through one of the Act’s founding texts, the Patient’s Bill of Rights. Options are expanding—choice of doctor and emergency-room services; more generous health plan decision appeals and help with the complaint and appeals process, in addition to wider insurance industry oversight; potentially increased preventive care coverage; the ability to comparison-shop for insurance health plans in new state-based Affordable Insurance Exchanges; and wider Medicaid coverage and discounted Part D-covered brand-name prescription drugs; among other benefits.

The Act also mandates that each individual obtain private health insurance by 2014 if not otherwise covered or face a penalty and it grants each individual state the power to shape the specifics of healthcare and its delivery as long as the plans chosen offer what have been defined as “essential health benefits.”

Some changes afforded by the new law have already been put into place. Others are still being rolled out. And, overall, more tweaks and fine-tuning are needed, some say.

Interactive & informational
A new Web site,, has been launched to help individuals understand what the changes mean for those living with HIV/AIDS and those who provide services for them.

The site provides users with explanations and analyses of new policies, opportunities to share information and pool best practices, and participate in needs-based advocacy efforts on both the federal and state levels., organized by AIDS Foundation of Chicago, Project Inform, the Center for Health Law and Policy Innovation of Harvard Law School/Treatment Access Expansion Project, the HIV Medicine Association, and San Francisco AIDS Foundation, provides individuals living with HIV, as well as healthcare professionals and social service providers, with a centralized site where they can learn about the benefits and challenges of HIV/AIDS-related healthcare reform and share resources on healthcare reform implementation and advocacy.

With funding support from the M•A•C AIDS Fund, the organizers have begun to collate resources and populate the site.

“All of the agencies have been working together for a very long time on healthcare reform and access to healthcare issues, and that’s been a longstanding collaboration among our organizations. About a year and half ago, we realized that in order to fully maximize the benefits of health reform for people with HIV we needed to do some basic education about the promise of health reform and the benefits it is going to bring for people with HIV,” says John Peller, AIDS Foundation of Chicago’s VP of policy. “There’s really no tool out there to do that.” selects out the most important information and translates the technical language so that readers can easily navigate the health reform policies and weigh in on certain issues.

“We tried to be light and a little sassy and fun and interesting because most people, and even service providers, are not going to dive into heavy, weighty tomes about health reform. They want the basic information and simple access to information that’s understandable, accurate, and tells the truth about how health reform will help people with HIV and anyone with a chronic disease,” says Peller, adding that accuracy is key because of the “incredible amount of misinformation, lies, actual wrong information about health reform” that is being disseminated. also responds to the need for state-specific information and advocacy. Advocates in California, led by Project Inform and San Francisco AIDS Foundation, have already organized a state blog about HIV-related health reform. But whether or not each state develops its own blog, the site will strive to cover both the local and national scene.

Benefits for the HIV community
The Affordable Care Act has garnered many supporters in the HIV/AIDS community, who point to successes in Massachusetts, which enacted health reform laws similar to the Act in 2006. With a minimum coverage requirement and almost universal access to insurance, the state saw a thirty-seven percent decrease in HIV infections compared to an eight percent increase across the nation between 2005 and 2008, according to NAPWA. One of the reasons? With more individuals

John Peller. Photo by Ed Negron
John Peller. Photo by Ed Negron
covered by insurance, the state’s federally-subsidized HIV/AIDS programs are able to focus more on preventive care.

Individuals living with HIV will surely benefit from the changes, according to Currently Medicaid covers about four in ten people with HIV/AIDS. In 2014, when Medicaid expands, most low-income people living with HIV will gain access to comprehensive healthcare. Those people with HIV earning between about $15,000 and $44,000 a year will be able to take advantage of tax benefits and financial assistance in order to secure private health insurance with comprehensive benefits. Only seventeen percent of people living with HIV had private health insurance in 2010, when Congress enacted the Affordable Care Act.

Other benefits include fairer treatment by insurance companies, effected by the new law, and more affordable Medicare Part D prescription drugs for those who are living with HIV and disabled in the program. Prevention testing for HIV and other chronic infections will also be better supported.

Peller believes that health reform will help stave off ADAP crises, as well. “There’s no question that health reform will in a lot of ways be the solution to the ADAP crisis.

“We estimate that at least two-thirds of ADAP clients will be eligible for Medicaid because their income [falls] below about $13,000 a year—their medications will be covered by Medicaid and they won’t rely on ADAP anymore. And then they’re going to be those with a higher income who are going to have private insurance that they can buy through the [Affordable Insurance] Exchanges and so they won’t need to rely on ADAP anymore.”

He continues: “We see AIDS Drug Assistance Program evolving into a co-pay program that helps people afford low premiums, afford the out-of-pocket costs, and [become] a wraparound program for insurance.”

More work to be done
“Health reform is really going to solve a lot of the HIV care access problems that we see in this country. It is without a doubt the most significant development in HIV care in the United States since the beginning of the epidemic. And the opportunities to expand access to medications is really tremendous—people with HIV won’t have the problems that they had before,” says Peller. “Now, that’s not to say that health reform is not without its flaws. Particularly, the inability of undocumented individuals to benefit from health reform is a major, major, major failure on the part of the federal government and that’s really going to be detrimental to the public health as well as to individual health….There’s other concerns around affordability that are pretty significant. So, we’ll be the first to say that health reform is not perfect, but it’s certainly going to be a whole lot better than the system that we have now.”

As needs are identified, the Web site will offer informed analysis, links to resources, bulletins, sign-on letters to legislators and the Administration—vital tools that advocates need. Advocates have already organized actions on issues like health benefits and deficit reductions, as well as protecting Medicaid and Medicare.

Health reform, of course, has been under attack from the get-go. Currently, the constitutionality of the law has been challenged in federal court in several jurisdictions and the U.S. Supreme Court will weigh in on the appeals in these cases this term and will begin hearing oral arguments in March of this year. Lambda Legal, on behalf of more than fifteen national HIV advocacy organizations, has filed an amicus brief in support of health reform policy changes, in relation to the Act’s advantages for HIV/AIDS-related preventive and care and treatment services.

In closing, Peller says: “I think the challenge in the next several years is going to be around funding—making sure that funding is available for implementation and for some of the programs that have been authorized by health reform. And then [the challenge will involve] monitoring and working with the Administration to make sure the decisions that they’re making around implementation meet the needs of people with HIV. We need to also think about building coalitions with other [health] group advocates because we can’t just worry about people with HIV—we need to look at the needs of people with chronic diseases, holistically.”

Log on to and its blogs, and for more information.

Chael Needle wrote about the Lead the Way campaign in the November 2011 issue of A&U.

February 2012