“Programs educate public on Mendelian Genetics and health: Young face tells truth
about HIV to D.C. youth
(Click on a photo to see larger image)
 | Jennifer Jako, left, speaks with Dr. Ann Nelson,
AFIP chief AIDS pathologist, center, and Sara Jones,
recruitment and outreach specialist at the Vaccine
Research Center, NIH, right.
| Jennifer Jako is an average mother and wife. She enjoys taking her daughter outside to play. She continues to work, and spends time with her family. But Jako is different. For the past nine years, she has been forced to take three pills a day, two times a day. Not adhering to this strict schedule would mean death.
When she was 18, Jako contracted HIV from one exposure to a friend who did not know he was infected. At the time, she made a decision to become abstinent. During a routine health exam, Jako was encouraged by a nurse to get tested. Jako learned she was HIV positive two weeks later. When she was diagnosed, doctors told her she would be lucky to live to be 25. Now 34 years old, Jako has spoken directly to more than 200,000 people and her media has reached more than 50 million, educating in hopes of preventing HIV infection in young people.
The National Museum of Health and Medicine has long offered special programs that enhance its exhibits. In conjunction with the temporary exhibition “Gregor Mendel: Planting the Seeds of Genetics,” the museum hosted “Jennifer Jako: Young and Positive, Living with HIV.” Jako shared her experiences with HIV, placing an emphasis on the genetic mutation of the virus and its implications for those infected. She also shared her documentary “Blood Lines,” which aired on MTV Dec. 1, 1998, World AIDS Day, as “True Life: It Could Be You.”
“I had no idea this could happen to me,” said Jako. “I thought the only people that got this disease were gay men and IV drug users.”
Jako took AZT for two weeks when first diagnosed, but became so ill that she stopped taking the drug. In 1997, when Jako was 25 years old, her immune system began to fail. After extensive research, she began a regimen of Nevirapine, 3TC and d4T, or HAART. In 1998, she replaced d4T with Abacavir because of severe side effects, including lipodystrophy. Jako has permanent truncal adiposity, a collection of fat at the waist, back and neck, and wasting in the extremities. She also experiences dangerously elevated lipid levels, both cholesterol and triglycerides, due to side effects from her medications, and is required to take additional drugs to treat them.
While an advocate for treatment, Jako emphasized the need for patient education and warned against complacency to the museum audience of students from local schools and colleges, as well as members of the community and medical professionals.
Jako also explained that HIV differs from many other viruses as it has very high genetic variability. This is a result of its fast replication cycle and leads to the generation of many variants of HIV in a single infected patient in the course of one day. Non-adherence and non-persistence with HAART allows the HIV virus to replicate a drug-resistant strain.
Jako’s message though is also one of hope. Jako has had complete viral suppression for more than nine years. In 2001, she married her husband who continues to test negative for HIV. They conceived a child together in 2005 through artificial at-home self-insemination, and in 2006 their daughter was born. She has also tested negative for the virus. Jako said her doctors told her she had about a 1 percent chance of passing the virus on to her baby—the same risk healthy mothers take in giving birth to a baby that could potentially be diagnosed with Down syndrome.
“In the past I just wanted to get old, have long gray hair I could pull up into a bun, and lots and lots of wrinkles,” said Jako. “Now my doctors are telling me I’m going to live to be a grandmother.”
Jako also took her message beyond the museum to youth leaders in Washington, D.C. communities in conjunction with the museum and the D.C. Department of Health. According to the D.C. Department of Health, one out of every 100 young people ages 13 to 24 in the district is HIV infected or has full-blown AIDS. However, a district-wide survey shows that only half of young people have been tested for HIV.
At Planned Parenthood, Ophelia Egypt Health Center, Jako spoke to youth leaders who are setting standards within their community and educating others on the importance of getting tested for STDs and knowing their HIV status. Metro Teen AIDS, Unity Health Care, Sasha Bruce and the Ward 7 HIV/AIDS Collaborative were in attendance.
“This event is the first time the National Museum of Health and Medicine has gone beyond our walls to take a full formal program out to the district to the people who it affects,” said Andrea Schierkolk, the museum’s public programs manager. “We hope to reach out to surrounding communities again in the future. Jennifer [Jako] was well received by all of our audiences.”
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