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Remembering Elizabeth Glaser’s fight for a childhood AIDS cure

A Mississippi 2-year-old born with human immunodeficiency virus is reportedly the first person to be cured of HIV with the treatment of anti-retroviral therapy.  News of the breakthrough made me think of my friend Elizabeth Glaser and how many years her crusade has gone on.

The virus that leads to AIDS was first recognized in the U.S.  by the Center for Disease Control 32 years ago after clusters of gay men, hemophiliacs, and heroin users began contracting rare illnesses that their battered immune systems could not combat.

The incurable disease, transmitted though exchange of body fluids, such as semen, breast milk, or blood, quickly became an epidemic in the 1980s and has, so far, caused more than 30 million deaths worldwide.  Among the most heartbreaking victims of the illness are infants who contract the illness in utero from infected mothers.  According to the United Nations, roughly 300,000 children are infected by mother-to-child transmission each year, most of them in the developing world.

In 1981, Elizabeth Glaser, a young mother in Los Angeles, married to 1970s TV heartthrob Paul Glaser, became infected through transfused blood during delivery of her baby Ariel.  Elizabeth unknowingly passed the disease on to her daughter via breast milk. Two years later, in a subsequent pregnancy and still unaware of her fatal exposure, she passed the virus to her son Jake.

Until demonstrations and lobbying by activists forced the hand of government to fund research, little was done medically or politically to combat the widespread plague.  No cure has yet been developed, although scientists eventually developed treatments – albeit expensive and often debilitating — that could keep the disease contained, provided patients undergo medicinal treatment for the rest of their lives.  Roughly 1,700,000 people still die of the disease each year, about 20,000 of them in the U.S.

Ariel Glaser died of AIDS at 7 years old in 1988.  Along with two Hollywood women friends, her bereft mother founded a pediatric AIDS foundation to advocate for treatment and research specifically focused on children with the illness.

I met Elizabeth when I was a U.S. senate staff member in the early 1990s.  She was unusual compared to the typical lobbyists in suits who came to the office.  She talked about movies and fashion as naturally as she discussed health-care policy.

By then, with the help of early virus inhibitors, she had been fighting the disease physically for a decade, but was nevertheless, tirelessly lobbying legislators to allow, and fund, testing of drugs for children. She told the 1992 Democratic Party Convention, it was “a matter of life and death.”

Elizabeth died of the disease in 1994 when Jake was 10.

The Pediatric Research Equity Act finally passed Congress in 2003.  Elizabeth’s spearheading efforts probably saved the life of her son Jake Glaser, now 28, and countless other HIV positive babies who can grow to adulthood living with HIV.

The Mississippi child takes the fight to the next level.  In an unusual protocol, the child was treated aggressively with anti-retroviral drugs starting around 30 hours after birth.  Despite five positive tests in the baby’s first month of life, and having discontinued treatment for the last nine months, the youngster recently tested negative for the virus at 26 months.  The toddler’s results suggest that someday at least newborn babies can be cured of the virus.

Elizabeth Glaser would be so pleased.

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