Bathroom Relief

Finding New Solutions
Have a frank talk with your physician about a common complaint: diarrhea
by John Francis Leonard

When antiretroviral therapy (ART) was introduced to patients across the board in 1996, it was revolutionary. It became apparent that those of us with HIV/AIDS could potentially live long and productive life spans. Lives were saved from near death and extended in so many more. While we are all thankful for these life-saving medications, what we’ve had to come to terms with is a host of continuing side effects and ancillary health conditions—it often being unclear whether those are caused by HIV still lying dormant in our bodies, or those medications that have caused its retreat. According to the U.S. Centers for Disease Control and Prevention, more than seventy percent of us living with HIV will be fifty or older by 2020—a miracle, yes, particularly for long-term survivors, but one that will send even more of us to our physicians for complications from treatment or the virus itself.

One problem familiar to many of us is chronic diarrhea. Dr. Maurizio Bonacini, Associate Professor of Clinical Medicine at U.C. San Francisco notes, “Diarrhea is a significant problem in many HIV patients, and unfortunately, they think there is nothing they can do about it.” Many physicians themselves compound the situation with a similar attitude about it. Dr. Bonacini also points out the reluctance of some patients to have honest conversations about the issue with their physicians due to embarrassment. But the numbers speak for themselves. According to a survey of 271 U.S. board-certified gastroenterologists, conducted for Napo Pharmaceuticals by Schlesinger Associates, ninety-three percent of gastroenterologists see patients with HIV/AIDS in their practice and eighty-four percent of the physicians surveyed rank diarrhea in the top three complaints of those patients. Fifty-three percent rank diarrhea as the number-one complaint among patients, with sixty-five percent of those patients reporting it as chronic.

It’s an issue that’s both embarrassing and highly inconvenient. We worry constantly about where bathrooms are located, avoid long trips, and miss out on social activities. It makes sexual activity problematic and uncomfortable for many, which further complicates having a frank conversation with our physicians because it makes doing so even more uncomfortable. Diarrhea can even affect adherence to ART regimens, increasing the possibility of developing resistant viral strains. Another problem we sometimes suffer with in silence, pain. The chafing caused by chronic diarrhea can be excruciating, but we feel, and are made to feel, that “it’s just something you have to live with.” But maybe not anymore.

There’s a fairly new medication on the market, Mytesi (crofelemer) and for many, it can provide much-needed relief for non-infectious, chronic diarrhea. Developed by Napo Pharmaceuticals, and sourced from an Amazonian tree bark, Mytesi is a game changer for many patients. Previously, there were few effective treatments for chronic diarrhea in HIV/AIDS patients that didn’t interfere with ART therapy. The only other possible solution was undergoing a battery of testing before one’s HIV medications could be changed. If that worked at all, it could be problematic because of the possibility of developing resistance to a whole class of HIV drugs. Mytesi requires much less testing, just verification that the diarrhea isn’t infectious in origin and a colonoscopy to rule out other possible causes. It’s a pill that is taken twice a day (with or without food), has few side effects, and does not interfere with ART therapy. It’s the only antidiarrheal studied and approved by the U.S. FDA for the symptomatic relief of noninfectious diarrhea in adults living with HIV/AIDS and on ART therapy.

So, how effective is Mytesi? In recent clinical trials, almost ninety percent of patients had a decrease in watery stools after twenty weeks of treatment. Of those with a decrease, eighty-three percent had at least a fifty-percent reduction in their diarrheal episodes and fifty-six percent had complete resolution of their symptoms. One other issue that we have to deal with as patients is cost. The best medication for a problem is of no use if it is out of reach financially. Already 100 percent of the top ten commercial insurance companies are covering Mytesi as well as most state’s Medicaid programs. Roughly one-third of ADAP programs, lifelines for people living with HIV, are covering it in their formularies. That’s not ideal, but this is a new medication and hopefully coverage will spread to the other states. Napo Pharmaceuticals itself offers co-pay coupons at These may also be available at your physician’s office.

All of this is great news, and it makes a conversation with your doctor more than worthwhile. And that’s where we come in. Roughly half of physicians are still not aware of Mytesi. It’s up to us, as patients, to be our own best healthcare advocates and let them know if we have to. It’s also time to get over the embarrassment. There’s no need for it, doctors have heard and seen it all. They deal with highly personal and delicate issues every day. There’s no reason to suffer in silence and just live with a condition that causes so much inconvenience and discomfort if there’s something that can be done about it. So, take a look at Arm yourself with information and speak up. It’s time to take responsibility for our own healthcare and our quality of life.

John Francis Leonard pens the Bright Lights, Small City for A&U.