The way of the HIV warrior

Dr. Peter Gulick has been my infectious disease doctor for years at this point. We both knew something was terribly wrong, but that it likely was not directly linked to my HIV infection. I was stable with that. I had been on medications for three years, my viral load was undetectable and my T-cells, the blood cell the virus hijacks and destroys, were stable and nowhere near dangerously low.

The visits to doctors and emergency rooms (not to mention stays in the hospital) went on for months.

Finally it was Gulick who stepped up and took action. After batteries of tests came back with positive results for a variety of bad bacterial infections, he referred me to a lung specialist. My lungs were healthy and working properly. So a bronchioscope was scheduled the day before Thanksgiving. The procedure, which I would come to affectionately call “the lung sucking” procedure, was successful. In consultation with the pulmonologist, Gulick was able to find the root of the problem.

A wiley opponent

Gulick has walked side-by-side with patients like myself for 33 years, offering care and compassion if not a cure.

While care has dramatically changed, and transformed the infection from a deadly disease to a chronic manageable condition, HIV remains a wiley and creative opponent. To keep it at bay, a person needs someone determined and creative to act as both physician and partner in the battle between patient and virus. Gulick is in some ways an accidental general in the HIV battlefield — a war he stumbled into 33 years ago. Now he is in charge of Ingham County’s infectious disease clinic, treating most of the county´s estimated 620 people living with HIV. He’s also leading the way as a professor at Michigan State University’s medical school in training medical students about the disease, the treatments, and the human beings affected and infected by HIV and AIDS.

Despite the many advances in medical care for people with HIV, and a deeper understanding of how the virus operates in the body and what it does, it can still be a mysterious little monster. And that was the case for me. I was experiencing something called Immune Reconstitution Syndrome (IRiS). As the body recovers and gets the virus under control with the aid of antiretroviral medications, the immune system comes roaring back, attacking all the nagging infections that had been lingering in the body.

Most people who experience it, however, experience it in their gut — the largest segment of the immune system. I was experiencing it in my sinuses. That causes excessive mucus build up which was draining into my lungs 24 hours a day. The excess mucus gave all those bacteria a delightful playground to set up residence.

Now, when I see Gulick, he remarks at how clear my lungs are, how much color I have. It was a battle with HIV, and we had won this one. Gulick is keenly aware of those battles, however.

For decades, he has been toiling in the trenches with this virus that has claimed an estimated 36 million lives worldwide. I am one of Gulick’s over 800-plus Michigan patients living with HIV. He sees us in Lansing, Saginaw and in Harrison, the county seat of Clare County and the only rural HIV clinic in the state. His life is immersed in the fight against the virus, and it has been a journey for him.

Gulick was not looking at a career in infectious disease in the very early 80s. He wanted to be a medical oncologist.

He even put in a year at a hospital in Buffalo, N.Y., working on cancer, but family issues brought him home to Cleveland. Because he was late in applying, he was unable to get into oncology at the pre-eminent Cleveland Clinic, but he did get a fellowship in infectious disease.

“I just kind of did infectious disease, and I fell into treating HIV,” he says. “That wasn’t something — obviously — I planned because it wasn’t even a recognized disease yet.”

Until 1983, HIV had not been discovered. All the medical expert knew was that young men were dying from a host of bizarre infections. They discovered those men’s immune systems were, for all practical purposes, destroyed. When Gulick began treating these mostly young men, the disease was still called Gay Related Immune Deficiency Syndrome (GRIDS). Well into the ´90s, the disease was devastating. There were no treatments for the virus — even after it was identified in 1984 — just prophylaxis for the bizarre diseases that took advantage of the defenseless bodies of those infected. Mortality was significant, Gulick recalls.

“Back then, when someone came in with a diagnosis of AIDS, you knew they were going to be dead in two years. You didn’t know what would kill them, but you knew they would be dead,” he said.

Compassionate caregiving

His colleagues knew how dispiriting the infection was. His interns would joke that Gulick was doing his rounds on “the morgue.”

He recalls how that attitude impacted one patient, many years ago.

He visited a patient who had posted a sign in his room declaring that unless visitors were going to smile, they were unwelcome. The patient informed Gulick he would no longer allow his two interns to treat him. Apparently they had not smiled.

“He said, ‘I know I’m dying, and I don’t need somebody to come in here and make me feel that way,’” Gulick recalls the patient telling him. “And you know what, he was right.”

Gulick chastised the two interns — both incredibly gifted and well trained doctors — reminding them that until they could deal with patients, they would fail at medicine. The interns, he recalls were shocked by this revelation.

The mounting death toll hit Gulick, he says.

“In retrospect, yes I was dealing with PTSD (post traumatic stress disorder),” the doctor said.

“Prior to HAART (Highly Active Antiretroviral Treatment — the first generation of multi-drug treatments that were effective in treating HIV), or ART (Antiretroviral treatment, as the treatments are known today), I was almost at the point where I need some help psychologically,” he said. “It was hard to go home every night and say, ‘Well we lost another two people, or three people.’ My wife could see the change in me. I mean I would not talk too much I had trouble sleeping. I was just in a real depressive mood.”

Weapons in the arsenal

But then, in 1995, the discovery of protease inhibitors, a new class of anti-HIV drugs, changed everything. Used in combination with earlier classes of drugs; the so-called cocktail had a miraculous impact on patients. T-cells rose, viral loads dropped, people who were at death’s door became well. Historically this period is known as the Lazarus Period in HIV. And that new treatment changed Gulick as well.

“For me it was like taking something that could make you high,” he says of his elation at having a weapon in his arsenal that was able to beat back the virus. “[The drugs] changed people’s lives.”

But some people did not benefit from the breakthrough. In the 1996 my friend David was put on the protease inhibitor regimen. It didn’t work to contain his virus and he died from complications to the infection in July of that year. He was told by doctors he had “failed the drug.” What that failure looked like is unclear, even to this day. It could have been he was unable to stick to the rigid time frames for taking the pills. Maybe he was unable to handle the consuming side effects. And maybe, the pills simply did not work because it was too late in the disease process.

Despite those drugs being a complicated treatment protocol requiring, sometimes, dozens of pills a day taken on strict time frames, and the drugs carrying significant side effects; Gulick and his patients pushed through.

At times he said he had to be hopeful to the extent of pushing the truth, in order to get patients to keep taking the toxic regimens.

“I didn’t know it at the time, but I told them the drug companies were working on new drugs. I did it to keep their hopes up — keep a little light in the distance,” he said.

In this revelation, Gulick is being purposely obscure. He served on advisory committees for a variety of drug companies, advising them on the development of their new drugs and their use. He has published articles encouraging testing to be implemented in family care practices, and he has been involved in studies about the virus and treating opportunistic infections. He would have known that there were discussions underway to make the drug regiments easier and less toxic.

And he was right. Now, those toxic and complicated multi-pill treatments are mostly gone. In their place, once-a-day pills are just as effective, but with fewer side effects. In fact, while before the treatments life expectancy for a person diagnosed with AIDS was two years or less; today a person with AIDS is expected to live at least 40 years, Gulick says. A person diagnosed with HIV is expected to live a completely normal life span.

Treatment is so good that Gulick now spends a lot of time worrying about patients’ aging issues — things like heart disease, one of America’s number one killers.

Gulick also witnessed what he called the “good news, bad news” of the new treatment.

“The good news, ‘God, you’re on medicines that are going to save your life,’” he said. “The bad news was, most of these people had given up everything. They’d sold their houses, their life insurance. They had nothing left because they were preparing to die.”

Respect for the gay community

Through his career, Gulick has also developed a deep sense of respect for the gay community. This, despite never having had contact with gay people before starting his career treating HIV.

He said it was watching the gay patients and their partners fight the disease together that helped him the most.

“Many times their families had totally given up on them, didn’t want to talk to them, just abandoned them. But yet what I found was that their partner stayed at the bedside. Stayed with their loved one, just didn’t give up on it,” he said. “They were just a support for the partner and for me as a doctor because it was so hard for me to treat young individuals that were dying and that I could do nothing about.”

He said the commitment of those gay couples was something he had never witnessed.

He said with other diseases, including cancer, he witnessed partners abandoning their loved ones. But not so with HIV.

And while the way we treat HIV has changed in the past three decades, he says some things remain the same. There remains a stigma to testing and access to care. One thing, he said, he has noticed however, is that the much ballyhooed crisis in treatment adherence particularly among black men who have sex with men is simply not true for his clinics.

The young black clients in his clinic in Saginaw are the most adherent, he says.

“I take the time to talk to them about why they need to take this drug, what it does,” he says. “I explain how it will make them healthier and prevent them from transmitting the virus to others. That works.”

He noted that the advent of PrEP (preexposure prophylaxis, a once-day-pill to prevent HIV) is also changing the landscape of HIV.

His dedication to ending the epidemic, and caring for those infected and effected was honored Nov. 24 by the Lansing City Council. The council unanimously passed a resolution declaring Monday, Dec. 1, Dr. Peter G. Gulick Appreciation Day. It acknowledged his work — which has often been behind the scenes, known only to those living with the disease, his peers and folks working to combat HIV in the community.

Gulick has become more than a doctor for me. He is a friend. He is also a partner in my battle against HIV. Our conversations are about more than just my disease progress — or lack thereof — they are about new studies and new ideas in preventing the epidemic from continuing.