Living with HIV
After being silent for years, Tami Haught is now an advocate to those inside and outside the HIV community
By Matt Miller
Tami Haught fights a constant battle, one that is slowly trying to destroy her. Day in and day out, she fights. The 41-year-old Nashua resident fights not only for her life but also for thousands of others affected by a disease that takes more than 18,000 lives each year. Years ago, everything known about Tami’s disease suggested she shouldn’t be here anymore. Gone, perished, no more. But this heterosexual, single mother is living testimony that in the darkest of times, life goes on, and that a deadly virus can hinder, but not take away, one’s heart.
Tami is HIV positive.
“It wasn’t supposed to happen to me — it was supposed to happen to someone else,” Tami said. “I often ask, ‘why me?’ There’s a stigma out there that it’s a homosexual thing, but it’s not. We like to think we’re safe in a little cocoon, but it can happen to you. You have to believe it can happen to you. You’re not safe, and if one person is affected, we’re all affected.”
Tami is just one of approximately 1,800 Iowans and more than one million Americans living with the human immunodeficiency virus (HIV). The Centers for Disease Control and Prevention estimate that 33 million people worldwide live with HIV and that approximately 56,300 Americans become infected each year. Surprisingly, one in five (21 percent) of those people with HIV is unaware of their infection.
“HIV is much more common than people believe,” said Randy Mayer, HIV/AIDS/Hepatitis Program manager with the Iowa Department of Public Health (IDPH). “It’s a disease that affects the most marginalized population. Every hot button issue is associated with HIV.”
According to the IDPH’s HIV/AIDS 2010 Mid-Year Surveillance Report for the state of Iowa, persons living with HIV/AIDS as of June 30, 2010, were 1,795. Polk County leads the state with 513 infected people, followed by Scott (181), Johnson (135), Linn (167), Black Hawk (86) and Woodbury (68). Through the end of June, 58 Iowans were newly diagnosed with HIV, nine fewer than the same time last year and more than three above the mid-year average for the past five years.
The ongoing concern about HIV/AIDS prevention is a top priority for IDPH health officials as reported cases have fluctuated over the past few years. Last year, 127 new HIV diagnoses were reported, 19 more (an 18 percent increase) than in 2008 and one less than the record-breaking mark of 127 in 2007. Seventy percent of cases involved the white population, followed by 15 percent in black/African Americans. Through June of this year, 27 cases have involved men who have sex with men and 11 cases involving heterosexual contact.
Reports by the IDPH indicate that last year 67 cases (53 percent) of the HIV and AIDS diagnoses involved men who have sex with men, 26 cases (20 percent) heterosexual contact and 13 cases (10 percent) of injecting drug use.
“These numbers are rapidly increasing, yet there is still no specific reason for the rise in diagnoses,” Mayer said. “The bottom line is that it only takes one incident, and you can become a victim.”
HIV damages a person’s body by destroying specific blood cells, which are important to helping the body fight diseases. It is spread primarily through not using a condom when having sex with a person who has HIV, multiple sex partners or the presence of other sexually transmitted diseases, sharing needles, syringes, rinse water to prepare illicit drugs for injection, being born to an infected mother or breast-feeding.
Tami’s story
Growing up in a small town in northeast Iowa, Tami was a stereotypical young Iowan. Following graduation and seeking adventure, Tami moved in with a friend in Park County, Texas. Before long she was introduced to a young man named Roger, and soon the couple planned to be married.
But suddenly, Roger, who’d had a blood transfusion in 1984 after an auto accident, became very sick. He was admitted to a Texas hospital for tests. The diagnosis shook the couple to its core.
Roger was diagnosed with full- blown AIDS.
HIV-negative people have between 600 and 1,200 T cells in a drop of blood. For HIV-positive people, a T cell count above 500 is healthy, but when it drops below 200, they are classified as having AIDS.
Roger had a T cell count of 12.
“When he was diagnosed, I was shocked,” Tami said. “I knew absolutely nothing about HIV and AIDS other than you die from it. Roger had the classic symptoms, but I had no idea.”
Then on Aug. 23, 1993, a day before her 25th birthday, Tami found out she was HIV positive.
“I wasn’t so shocked when I was diagnosed,” she said. “I was prepared for it but didn’t have time to feel bad. Roger was extremely sick. I couldn’t leave — we were engaged. I loved him.”
Doctors told Roger he had only a few months to live and even suggested the couple cancel the wedding.
“The doctors were blunt and said we shouldn’t have the wedding because he wouldn’t make it that long,” Tami said. “We weren’t that type of people though — we weren’t going to cancel our special day.”
While in Texas, speculation arose about Roger’s health issues. The couple told friends and neighbors that Roger had cancer.
“If you have cancer, people care. If you have AIDS, people judge,” Tami said. “We didn’t talk about it. The stigma of HIV/AIDS being a ‘gay man’s disease’ was almost unbearable.”
Searching for better medical care and to escape the ever-present agonizing discrimination, Roger and Tami moved back to Iowa. Four months following Roger’s diagnoses, the couple married on Nov. 27, 1993, in the Little Brown Church in Nashua. Roger defied his doctor’s life expectancy. He lived for three more years, but eventually he came down with pneumonia, his kidneys stopped working and his body began to shut down. Roger died Oct. 12, 1996; the family told funeral visitors he died of cancer.
“He finally died more from his emotions than anything else,” Tami said. “He was tired of living with a disease that most people believe is homosexual. Physically he was tired, but emotionally he was gone.”
Leading up to Roger’s death, Tami said she stopped using birth control after her husband told her he was sterile. Much to her surprise, two months after Roger’s passing, Tami gave birth to a healthy 7-pound baby boy she named Adrian. Miraculously, Adrian was born HIV negative.
Tami says her family kept her secret of being HIV positive from the waning ears of others for seven years. But in small-town Iowa, rumors swirl like the wind, and soon the family’s secret was too much to bear. Residents whispered about her husband’s death, and eventually people soon found out that Roger died from AIDS, not cancer.
“It was constantly, ‘who knows?’” Tami said. “The stress to keep it a secret took its toll on everyone.”
That’s when Tami decided enough was enough. The single mother of an elementary-age student at the time was more concerned about her son’s well being rather than what people thought of her. She says at that moment she decided to be “pro-active instead of reactive.” She sat down and wrote a letter to family, friends and the Nashua-Plainfield school district telling them she was HIV positive, but her son, Adrian, was HIV negative.
If you are reading this, you either know a member of my family or myself. There is no easy way to way say this, so here it goes — my husband, Roger, did not die of cancer, he died of AIDS. Yes, I am HIV positive. By the grace of God, Adrian is HIV negative. He is a perfectly happy and healthy boy.
“My worry was that Adrian wasn’t going to be invited to do things like go to birthday parties and get-togethers — that’s why I wrote the letter. The school district didn’t want to deal with it, but I told them this is going to happen with or without you. I sent the letter, and there have been no problems since.”
Tami understands what took the life of husband could some day take hers. She says it’s a “blessing” that she’s still here 17 years later and excited to be a “soccer mom” and to play with her son who is currently an eighth grader.
Tami’s struggles continue though. HIV medicine is an ever-changing field — Tami knows this to be true. She is currently on her third drug regimen after the virus became resistant to the first two. She takes six HIV medications a day, but her intake may reach 20 if necessary. The medicine has made the virus undetectable, meaning the amount of the virus in the blood is too low to be measured. Still “undetectable” doesn’t come without a price as daily side effects rip through her body.
“I’m tired all the time,” Tami said. “I suffer from migraines, memory loss and insomnia. It’s horrible. I have diarrhea, and if I don’t have diarrhea, I think something must be wrong. I’m told I get enough sleep, but I don’t feel like I’ve had a good night’s sleep in 10 years.”
For health officials like Mayer, he says today’s drugs can assist someone like Tami to live fulfilling lives.
“People don’t realize with the drugs we have now, the life expectancy isn’t reduced as much as if you didn’t have HIV,” Mayer said. “But you have to get into care, stay in care and stay on top of taking your medicine. If you miss even a few doses, it can have a big impact. HIV is resistant, so it’s important to take the right medicine at the right time.”
Tami’s outlook on life has changed dramatically since being diagnosed with HIV. She looks forward to seeing the sunshine, she wants to see her son graduate from high school, and she wants to be like everybody else. Today, Tami speaks out about living with HIV to colleges across the state, along with high schools in northeast Iowa.
“I figured it was time to step up or shut up,” she said. “The hardest part about living with HIV is that people want to place the blame on you. It’s not just a stereotypical gay man’s disease. We’re a global society. My favorite quote these days is similar to the Vegas quote: ‘What you contract in Vegas comes home with you.’ ”
Tami’s advocacy for HIV awareness has taken her to the annual “Day on the Hill” in Washington, D.C., and she has participated in rallies at the state capitol, too. She currently serves as president of PITCH (Positive Iowans Taking Charge) located in Des Moines. Founded in 2007, the volunteer-run nonprofit organization provides social networking and support to Iowans living with or affected by HIV/AIDS.
“I’ve become more and more involved in the community. It’s been life-changing,” Tami said. “It’s been wonderful because I’m meeting some extraordinary people who are going through similar situations like mine. There really is support out there.”
Another local organization Tami is involved with is the AIDS Project of Central Iowa, the largest HIV/AIDS service and prevention agency in Iowa. The organization, with a new mission statement of “Infinite Compassion. Unyielding Commitment,” serves more than 300 clients statewide, with a majority of its clients in Polk, Dallas and Warren counties. In December 2009, The AIDS Project of Central Iowa was just one of many agencies and individuals across the state to participate in the Iowa HIV Anti-stigma Alliance with the campaign slogan “HIV won’t stop me.”
“We want to address the stigma that people associate with HIV,” said Frank Vaia, development coordinator for the AIDS Project of Central Iowa. “The stigma is that it’s a gay disease and that people with HIV do it to themselves. That’s not correct.”
The AIDS Project of Central Iowa offers free, confidential rapid HIV testing throughout the week and has a handful of case managers committed to working with those affected by HIV.
“We work in close one-on-one relationships and have employees to help stabilize an individual and help them move forward with life,” said Tas Clayburn, minority HIV program specialist at the AIDS Project of Central Iowa. “We take a holistic approach to our clients that we want to help improve their quality of life the best we can.”
Clayburn says that Tami is the perfect example of someone who can bring inspiration to others living with and affected by HIV.
“Tami puts a familiar face to HIV, but unfortunately she is becoming a more and more familiar face,” Tas said. “She’s a heterosexual mom — it’s not the first image you think about when you think of HIV. She has an amazing story who has been a huge advocate not only for herself, but for other communities.”
The AIDS Project of Central Iowa has a handful of events throughout the year to help bring HIV/AIDS awareness to local communities. Events include the “Iowa AIDS Walk/Run,” “Stars” and “The Benefit,” which was held on Nov. 7 at the Embassy Suites on the River. More than 400 people attended “The Benefit” that raised more than $30,000 through silent and live auctions.
“There are two reasons why we have these events — they are fund-raisers, and it gives people an opportunity to be connected on a social level with our agency and the work we do,” Vaia said. “We do this because we have a passion. If we can make a difference in someone’s life, it’s worth it.”
HIV on a national level
The HIV/AIDS crisis continues to be a hot topic at the national level, too. In July, the Obama administration created a new strategy to fight HIV/AIDS in the United States. The 45-page report details a three-fold approach: to reduce the number of HIV infections, to increase access to care and to optimize health outcomes for those living with HIV, and to ensure equality in care for HIV.
“The overall idea that the Obama administration is trying to do is find out if the money is following the epidemic,” Mayer said. “It seems like officials are going to put money at the national level in the high-incident cities. That will affect Iowans because we don’t have the big cities like other parts of the country. We’re going to have to figure out a way to slow the rate of HIV here in Iowa while they take away our funds.”
According to the IPDH, this year the CDC awarded the HIV/AIDS Surveillance Program $7,478 to supplement ongoing core surveillance activities. The department says the funds enable the program to geocode their data and link enhance de-identified data to data on the social determinants of health.
In October, the IDPH held the 11th HIV, STD and Hepatitis Conference entitled “2010 – A New Decade: A Call for Change.” The event featured guest speakers and workshops addressing the epidemic.
“The purpose of the conference was an overview of what’s happening nationally and to move our program forward in the state,” Mayer said. “We’re fortunate to have some of that money, but who knows if we’ll have enough funds in a couple of years.”
Mayer says the next step the IDPH will take is when he will participate in the HHS Consultation on HIV/AIDS Funding Formulas and Resource Allocation on Nov. 29 in Washington, D.C.
“The biggest challenge we face as a state is that as more people get HIV, our resources continue to go down. We’re operating with less when we’re needed more than ever.”
Not giving up
Many words like “victim” or “sufferer” can describe Tami, but she isn’t concerned with that. Her goal is to help break the HIV stigma that has plagued many like her for years. Tami is the clear definition of a survivor fighting an ugly fight. She wasn’t expected to make it this far and is living with a disease that once was considered a death sentence.
“Being HIV positive has made me a better person,” Tami said. “I’m not as judgmental any more, and I have met some of the most incredible people through the HIV community. You have to remember you’re not alone.” CV
