Joyce Lawson Noto holds a photo of her family, including former husband Ron Lawson, who passed away in 1994 from HIV/AIDS. (Tony Duncan/ Johnson City Press)
Ron Lawson wasn’t at all the stereotypical person battling HIV/AIDS in the early 1990s.
At the time, many people believed only gay men and hardcore drug users could contract the disease.
Lawson, who suffered from hemophilia, found out he had HIV in 1991. Disproving the stereotype, Lawson contracted the disease through a tragic pharmaceutical error in which tainted products were distributed to thousands of people.
Devastated by the news and concerned about the assumptions people might make, Lawson’s family initially kept quiet about his diagnosis.
But they eventually decided to go public with Lawson’s illness despite their concern about the backlash and reaction from friends and community members.
“I was concerned that people would ostracize my children. At the time, my children were 17 and 12,” Lawson’s widow, Joyce Lawson Noto, said. “My son was getting ready to graduate from high school, so it wasn’t so much him as it was my daughter. When we went public, she had one or two situations happen (where) people made little remarks. One boy made a remark that he was going to write a story about Joy and her gay family.”
Noto went to her daughter’s school, Dobyns-Bennett High School, the next morning and told the principal “this is not going to happen.”
“I was very upset,” Noto said. “There were situations where I felt that there were people that were scared of us during that period of time. I wasn’t going to allow anybody to harm my family.”
Traveling to Dallas with her husband to be a part of a support group for people infected with HIV due to hemophilia treatments, Noto said she learned the truth surrounding what she called a “cover up” between the government and the pharmaceutical companies.
“They had led us to believe that only a very small percentage of people got infected with HIV that had hemophilia, when in fact it was over 10,000,” she said. “Some of them then infected their wives, their children that were conceived. Hemophilia is a genetic disorder and when you had one person in the family with hemophilia, you usually had more than one. The (Blood Product Advisory Committee) was made up of these pharmaceutical company’s executives and they weren’t going to cut their own throat. The pharmaceutical company knew they were sending out these contaminated blood products. They are the ones we blame.”
Furious, Noto set out to bring attention to the issue, and consulted then-U.S. Rep. Jimmy Quillen, who shared in her anger.
Calling for a congressional investigation, Quillen reportedly set out to right the wrong that had been done to so many. Noto was invited many times to Washington to tell her family’s story and to testify.
“I was there about 28 times in a two-year period advocating for the Ricky Ray Hemophilia Relief Fund Act,” she said. “It was being done through the government, so (we) were trying to see some justice for what had happened to our families. He was the first co-signer on with (then-Fla. U.S. Rep.) Porter Goss (who) wrote the Ricky Ray Hemophilia Relief Fund Act.”
The act, signed into law by President Bill Clinton in 1998, states that compassionate payments will be made “to individuals with blood-clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated antihemophilic factor, and for other purposes.”
“Before we went public, when we were secret, we were devastated,” she said. “Even when we went public, I was still devastated to watch him die the death that he died. We actually watched him deteriorate. Just skin and bones. It affected his brain cells. I was seeing a lot of behaviors out of him that weren’t normal behaviors.”
Lawson died Sept. 6, 1994.
At first, Noto said she couldn’t bring herself to get tested to see if she had been infected with HIV and said she “felt I could live better without knowing for sure.”
Three months after her late husband’s death, though, Noto did get tested and all of the results came back negative. Calling herself a “walking miracle,” Noto said she was thrilled with the news, especially because Lawson’s test results had revealed he not only contracted HIV/AIDS, but also multiple types of hepatitis.
Today, she attributes her drive to help people better understand the disease to the experiences surrounding her late husband’s battle with the illness.
“I think it’s everybody’s disease and I think everybody should work toward a cure for AIDS,” she said. “Just because we have drugs to help (people with HIV) live longer, I don’t think we need to get lax in the education of HIV.
“I do think the younger generations are more accepting (of people with HIV/AIDS) and are not as scared as they were back in the 80s and 90s. It doesn’t matter who they are, or what they are or how they got it. To me, I think we need to embrace these people and give them support.”
World AIDS Day is observed annually Dec. 1.