When Toni Johnson was diagnosed with HIV in 1993 she burst into tears.
“I thought, ‘What am I going to do?’” she remembers. “I was engaged to be married. It pretty much changed everything”
But even though her life had just been upended, Johnson knew that she couldn’t mourn for long. Shortly after her diagnosis, she became a client at the People With AIDS Coalition of Utah, a non-profit organization dedicated to HIV/AIDS education and improving the quality of life for people with the disease.
“They were fabulous to me, they helped me so much,” she says. Shortly after joining, Johnson also became a volunteer for the organization. She joined the board of directors in 1999 and became PWACU’s director in 2001, when the previous director had to take a permanent medical leave. During her seven year administration, Johnson has taken the organization to new heights by creating (and running) its support groups for heterosexuals and women. More recently, she has also put together PWACU’s thrift shop. Our Store: Your Thrift Alternative opened on Nov. 1 with the goal of eventually making the 20 year old organization self-sustaining. And she is also assembling an advocacy program to secure more state money for Utah’s AIDS Drug Assistance Program.
Needless to say, she is a very busy woman, putting in at least 50 hours at PWACU each week.
“But I love my work here at the office,” she says. “It’s good for me personally. It makes me feel good that I’m helping the community, helping others who might not have the great support I have.”
Johnson has come a long way in her life. Born in Payson, Utah she jokes that her small town didn’t even have a street light during her childhood.
“There are a couple now,” she laughs.
While some youngsters set their sights on such romantic careers as astronaut, ballet dancer or U.S. president, Johnson decided that she wanted to be an accountant at age 15. She excelled in her mathematics courses and loved crunching numbers in her high school accounting class.
“I wasn’t planning on being a director of a non-profit,” she says. “I was planning on having my own acct firm and being independently wealthy.”
But shortly after deciding on her career, Johnson found herself taking high school accounting while working at a yogurt shop in Phoenix, Arizona, where she moved with her 17-year-old boyfriend. The relationship ultimately did not work out, and Johnson returned to Salt Lake City a year and a half later. She earned her accounting degree she opened her own business, Accounting & More, in 1998. She specializes in tax preparation, articles of incorporation, bookkeeping and payroll services.
When she isn’t helping clients navigate IRS forms or incorporate their businesses, Johnson can be found in her PWACU office at work on several projects. After getting Our Store off the ground, her next goal is to secure more state financial help for people with HIV/AIDS, who often need assistance to pay for their expensive drug regimens.
Although the number of Utahns with HIV or AIDS has increased dramatically, Johnson says, that the state still receives flat funding from the Ryan White CARE Act, a federal program that provides funds for medical care to under or uninsured people with HIV and AIDS. And when funds don’t match this rate of growth, she explains that the state Ryan White program has to keep cutting services for its current clients to accommodate.
To make sure that all Utahns with HIV/AIDS receive the medical care they need, Johnson is assembling an advocacy committee to ask the state legislature for $250,000 to cover its ADAP program. The state dropped all money to ADAP this year when AIDS activist and PWACU member Stuart Merrill moved out of state and no one asked them to renew the funding. The result? The Utah Department of Health implemented a wait list for its program and drastically cut the number of drugs ADAP would pay for.
Revitalizing ADAP, says Johnson, is important not only for people with HIV/AIDS but for the state budget, which can save a considerable amount of money by keeping patients ADAP could help off Medicare. To let senators and representatives know this, she and a host of PWACU volunteers mailed each of them a letter and ADAP fact sheet in September. Next on the list: attending the meetings of legislative committees and doing follow-up phone calls to ask legislators for their support in the 2009 general session.
”I’ve asked the committee, especially people with AIDS, to write letters to the editor and about how Ryan White was instrumental in helping them so I can send them out to the press to hopefully get some coverage on it,” she said.
When not doing taxes or advocating for people with HIV/AIDS—or in what she calls “my spare time which I have none of”—Johnson says she enjoys beadwork and working on a hook rug that has now been a work in progress for three years.
“It goes on vacation with me and that’s usually the only time I get to play with it,” she laughs.
She is also the proud mother of a cat named Buddy and a miniature schnauzer named Ofmy, short for “love of my life.”
The real love of Johnson’s life, however, is PWACU.
“It’s a great organization that helped me so much. I just have a need for it to continue to help other people,” she says.
Visit PWACU at pwacu.org and Toni Johnson at tonijohnson.net.