St. Louis Post Dispatch
For more than a dozen years, Rahjae Cooper knew his mother’s secret, although he wasn’t sure what it meant at first.
He overheard her talking on the phone to a friend. He was 8 years old and didn’t feel right asking her about something not intended for his ears.
“I never wanted to let her know, to break that trust,” Cooper said.
Last July, Cooper’s mother, Dwynise McCottrell, came down with pneumonia. She was dropping weight. She was moody, and pulling away from friends and family.
“We had an argument about her not loving me enough. Her irritability was making me feel like I was not loved.”
McCottrell turned to her son.
“I’m HIV-positive. I’m not sure how much longer I have to live.”
Three months later, at age 41, she was dead.
Today, Cooper, 22, an only child, continues to struggle accepting his mother’s death. He grew up learning about HIV in secret. He found out there was no cure but it was treatable, and that those diagnosed early can get on medication and usually lead a normal, healthy life.
That was the case with McCottrell at the beginning. But at some point, she stopped treatment — something that happens with frustrating frequency for those who work in HIV care.
In the St. Louis region, at least 2,000 people know they have HIV but have been off treatment for at least a year. That represents just under a third of the estimated 6,720 cases in the region.
When she was being treated for pneumonia, McCottrell told the doctor she was off her HIV medicine because she was feeling fine without it. Taking the pills, she got dizzy and weak, and they made her throw up.
The side effects of medication is one of several reasons people stop treating their HIV. Denial, stigma of the disease, the fear of others seeing their prescription drugs, and affordability of care are other reasons.
Depression can accompany HIV, leading to a sense of hopelessness. Some people just give up.
McCottrell had known her status since at least 1998, and shared the news with her mother, Deborah Holmes, early on.
“At that point she didn’t seem too alarmed, saying, ‘Mama, they got medications,’” Holmes said. “At the time I thought: ‘My daughter’s intelligent. I’m sure she will take the bull by the horns and do whatever necessary.’ Now I know I can’t take something like that for granted.”
McCottrell died on Oct. 28, her mother’s birthday.
A MANAGEABLE DISEASE
St. Louis Effort for AIDS, which provides HIV testing and prevention education, is one of 13 organizations nationwide in the middle of a five-year effort to identify and bring back into the fold those who have fallen out of care. Their results are shared with Johns Hopkins University, which is studying ways to best get those with HIV back into treatment.
For three years, the St. Louis agency has worked with doctors, community outreach groups, social workers, churches and others to identify those who are no longer on HIV treatment. Of the 2,000 identified, 239 had been contacted by the end of December. Of those, two-thirds have seen a doctor.
The goal at the end of five years is to have 500 people back in care.
Cheryl Oliver, executive director of St. Louis Effort for AIDS, said the initiative has highlighted how prolonged neglect of the disease can take its toll. Forty-five percent of those contacted have AIDS, and four of them have since died.
“HIV is a manageable disease, if it is managed,” Oliver said.
But that is the struggle, she said.
There are about 1.1 million people in the U.S. living with HIV and AIDS. And while tremendous strides have been made in the past 25 years to move HIV from certain death to a chronic disease, nearly 17,500 people continue to die annually.
“There are people who still see it as a death sentence. Others think it’s not a big deal. Both are wrong,” said Dr. David Parks, who specializes in HIV care in St. Louis. “It is a big deal, but a controllable big deal.”
The number of HIV infections in the region has remained fairly stable over the last decade, averaging 267 cases a year. But after 245 cases were diagnosed in 2011, the lowest in 24 years, the number jumped to 286 the following year.
Doctors say infections in teens and young adults continue to climb, as do infections in women who believe they are in monogamous relationships and among African-American men “who have an element of denial to their sexuality,” Parks said.
Young gay men don’t consider the disease life-threatening, seeing HIV as something akin to high blood pressure and controlled by a pill a day.
“If they have never watched a friend die of this, their behavior does not change because they don’t have those personal experiences,” said Dr. David Clifford, with the AIDS Clinical Trials Site at Washington University, part of a national research group working to develop and test therapies to treat HIV and AIDS.
It was seeing his friends die that compelled Parks, at age 31, to quit his job as a chemical engineer at Monsanto and go to medical school. He finished his residency at Washington University in 1997.
“I started practicing at the time they had something to treat with,” said Parks, now 55. Today, he sees patients not just surviving but thriving.
That’s why for those such as Parks who have devoted their work to helping those with HIV, the fall away from care is so difficult to grasp. “The common thread in all the cases is denial,” Parks said. “Denial in a human being is extremely powerful.”
James Goebel knows that all too well.
Twenty years ago, after getting out of the Navy, Goebel stayed in San Diego, where the St. Louisan came out of the closet. “I met guys. It was a new awakening.”
During a checkup in 1996, his doctor told him he was HIV-positive. He began taking medication — nine pills at various time of the day. He continued taking the pills when he returned to St. Louis two years later to be closer to his ailing mother.
But the pills to treat his HIV were making him nauseated. So after three years of treatment, he stopped.
“I felt better when I didn’t take them,” Goebel said. “It’s weird, but I didn’t have any symptoms.”
For more than a decade he went untreated until a gallbladder attack landed Goebel in DePaul Health Center in early 2010. A doctor told him he was HIV-positive. Goebel played it as if he didn’t know, mainly because his sisters were in the room and he had not told them about his sexual orientation, let alone his HIV status.
The health scare was the jolt he needed to get back and stay on his medications. He was put in touch with a doctor involved in the initiative by St. Louis Effort for AIDS, known as the BEACON Project, short for Barrier Elimination and Care Navigation.
“The regimen I’m on now, I haven’t missed a single dose,” said Goebel, 49, of Breckenridge Hills. Goebel said the medicine makes him slightly dizzy and queasy. But the symptoms are lessened if he takes the four pills each night before bed.
Goebel is staying on the medicine for himself — and for others, he said.
“Whoever I got it from didn’t tell me, and I don’t want to do that to somebody else,” Goebel said. Those who are HIV-positive but on successful treatment greatly reduce their risk of infecting others.
IN THE TRENCHES
The progression of treatment has vastly improved from three decades ago, when gay men were dying quickly from a mysterious disease and Parks was among those wondering if they would be next. Many men, including Parks, experienced guilt similar to what soldiers feel when they leave the battlefield uninjured as others lay dead.
“Why him and not me? I’m in the trenches too. When is my bullet coming?” Parks said, recalling his days as a young gay man. “I don’t know how I escaped it.”
In those early days, even before AIDS had a name and no one knew what was causing it, Parks thought his skills working with drugs and plants at Monsanto could be put to better use helping find treatments for the disease killing his friends.
Before he applied to medical school at St. Louis University, he had to do something: get tested.
“If I was negative, I’d go,” Parks recalled. But if he tested positive, he would skip medical school and prepare to die.
Today, doctors who not that long ago were fighting to keep patients alive now talk of a cure.
“In terms of medical progress, it’s one of the best success stories out there,” said Clifford, with Washington University. “But it’s also a blessing and a curse. Because of the development of therapeutics, some are not taking it as seriously. But they underestimate the burden of a lifetime of taking a therapy.”
For doctors such as Parks, it’s heartbreaking to hear about those who have succumbed to a disease that so many have been able to effectively fight. There are different drug therapies available, and patients can work with their doctors to make changes if a medicine is making them sick. No longer does HIV automatically mean fatal virus.
“If I was 31 today, and still at Monsanto, would I have seen the effects of this disease that made me feel like I needed to quit my job and throw my whole self into doing this? Probably the answer is no, because people would be doing OK.”
When his mother finally told him she was HIV-positive, Cooper told her he already knew. Her look was one of surprise and relief. She told her son she stopped taking her medication in 2005 after going to a clinic for treatment and seeing someone she knew. She fled and never returned.
But after going to the doctor for pneumonia, she went back on her medication. Cooper knew his mother was fading, but he didn’t give up hope.
Cooper thought that if he could just get her to eat, his mother might get better. When she was having trouble taking her pills, Cooper cut them in half and wrapped them in peanut butter.
“I made her a strawberry shake. She was so happy at how it looked and I was so happy to see her happy,” Cooper recalled, tears on his cheeks. But she couldn’t taste it.
“I felt so defeated. I thought I’d fixed her.”
As the end neared for McCottrell, she had fallen to 95 pounds from 150 — 30 of those pounds lost in the last month. She told her mother not to call family or friends.
“She was a beautiful young woman,” Holmes said. “She took pride in how she looked. Her hair, makeup, everything perfectly in place. I don’t think she wanted anyone to see her as a person helpless or who resembled the AIDS cases of old.”
Holmes, a minister who gave the eulogy at her daughter’s funeral, shared the conversation she had with God just days before McCottrell died.
“The best gift you can give to me is to take her,” Holmes prayed.
Two months before McCottrell died, Rahjae Jr. was born — three months premature. McCottrell was able to visit her grandson in the hospital and tell him how he looked just like his daddy.
Holmes said the baby’s early arrival was God’s work, quoting from the Book of Job.
“The Lord gave, and the Lord hath taken away.”
Holmes looks forward to her next birthday, refusing to see it as the anniversary of her daughter’s death.
“It’s a time to celebrate the day she entered eternal life. I will cherish that thought.”
Cooper, who splits custody of his son with the boy’s mother, lives in the University City apartment he shared with his mother. He wrestles with guilt, blaming himself for not getting involved earlier. For not being able to do more.
For not telling his mother all those years ago he overheard a phone conversation she had with her friend — the man who had infected her as well as two other women.
Now, all four of them are dead.
“If I had told her earlier, I think it would have helped her feel normal,” Cooper said. “To let her know that I loved her and that’s all that was important to me.”
Being open now about his mother’s HIV is the best way to save others, he said.
Despite criticism from some family and friends, he says he will keep talking about it, encouraging others who have lost loved ones to AIDS to speak out about its very real dangers.
“It will be all right,” Cooper said. “It’s not your fault they are gone. All you can control is the now.”
It’s advice he hopes to take to heart.