Northeastern University public health expert Jean McGuire will speak at the White House on Wednesday, delivering remarks in honor of the 25th anniversary of the signing of the Ryan White Comprehensive AIDS Resources Emergency Act.
McGuire was one of the nation’s leading HIV awareness advocates when President George H.W. Bush signed the CARE Act into law on Aug. 18, 1990. As the executive director of the AIDS Action Council, she worked to convene a diverse political coalition that succeeded in pushing Congress to pass the landmark legislation.
“The council considered the CARE Act a major success,” recalled McGuire, now a professor of the practice in the Department of Health Sciences in the Bouvé College of Health Sciences. “It has saved many lives and built a care delivery infrastructure and clinical capacity that has endured.”
The invitation-only White House event will convene a score of AIDS awareness advocates and lawmakers both past and present, including former U.S. Rep. Henry Waxman, the CARE Act’s lead author. Together, they will reflect on the bill’s impact over the past 25 years and discuss its current place in the nation’s ever-changing healthcare landscape.
The legislation created the Ryan White HIV/AIDS Program, the most comprehensive federal program for people living with HIV. Funded at $2.32 billion in 2015, it currently provides drugs and support services to more than 500,000 people who do not have the financial resources to manage the disease.
The CARE Act is named in honor of an Indiana teenager who was diagnosed with AIDS following a blood transfusion and died just four months before Congress enacted the legislation. White’s mother, Jeannie, will be attending Wednesday’s celebration.
“I would never have thought that Ryan’s legacy would still be ongoing today,” she told an Indiana TV station in June 2014. “I think he opened the eyes to a lot of people to make this a disease, as Ryan always said, and not a dirty word.”
Noted McGuire: “The bill never would have come to fruition without people living with the disease who were courageous enough to be out and active so early in the epidemic. All of us who had the opportunity to work with them to make this happen were privileged.”
The fight begins
More than 1.2 million people in the U.S. are currently living with HIV, according to the Centers for Disease Control and Prevention. Almost one in eight—or about 150,000—are unaware of their infection.
McGuire joined the fight against HIV in 1985, four years after the AIDS epidemic broke out in Los Angeles, San Francisco, and New York City. She was working as a healthcare lobbyist in Washington, D.C., when her primary foci—fair housing and the rights of developmentally-delayed children—suddenly grew more complicated due to the HIV outbreak.
As a profile of McGuire on the AIDS Action Council’s website put it, “Could people who were sick with AIDS, and who were routinely denied housing or evicted after falling ill, be considered to have a disability and therefore protected? And could children born with AIDS be considered disabled and eligible for benefits?”
By the time she joined the council in 1987, McGuire was particularly attuned to the ins and outs of the AIDS crisis. Her responsibilities ran the gamut, from raising money for HIV research to arranging meetings with community health centers, Catholic churches, and the American Medical Association. She fostered a strong relationship with the National Commission on AIDS, working with high-ranking members to set up Capitol Hill hearings on the crisis.
“We needed to create an echo chamber,” she explained. “We looked for sympathetic faces to speak to the public, voices who could be architects of our strategy.”
The fight continues
Following the passage of the Ryan White Act, McGuire stepped down from the council and returned to academia. She earned her master’s in public health from Harvard University in 1991 and then received her doctorate in social policy and political science from Brandeis University in 1996, writing her thesis on the ethics of community-based clinical HIV research.
After enhancing her professional credentials in the university setting, she was named the director of the HIV/AIDS Bureau for the Massachusetts Department of Public Health. Her six-year tenure with the bureau, from 1997 to 2003, included overseeing its $85 million HIV surveillance program; conducting research into care quality; and developing innovative substance abuse treatment programs.
Over the past 12 years, McGuire has continued to remain active in the fight against HIV. In 2007, for example, she co-authored a major paper in the American Journal of Public Health on the CDC’s HIV prevention plan and the challenges of establishing a national strategy. More recently, she’s supported the development and implementation of the Obama administration’s HIV plan, an updated version of which was released in July. Today, she sits on the advisory boards of the American AIDS Political Action Committee, ViiV Healthcare, a pharmaceutical company specializing in the development of HIV therapies; and Boston’s Shattuck Hospital, which focuses on treatment of HIV and other infectious diseases.
“I’ve had the good fortune to bring together my intellect, my passions, my politics, and my faith in what has been lifelong work focused on building community, equity, justice, and opportunity,” said McGuire, reflecting on her career in AIDS advocacy. “Public health has been a particularly rich environment within which to engage the struggles about basic human rights, in part because success depends on having the engagement and leadership of those most affected.”
In the classroom, McGuire tells her students to embrace their inner advocate and doles out keen advice to those looking to affect positive change. “Never stop building the evidence you need and keep your eyes on the prize,” she urges them. “Not every compromise is worth it.”