It’s time we as a community start discussing the elephant in the room: diarrhea. We get it — no one wants to mention that it's one of a few common side effects of having HIV. It’s embarrassing, somewhat degrading, and more often than not we think we’re the only person going through it. But we’re not.
There are 18 million people with HIV currently on antiretroviral therapies, and according to a study by Patrick Clay, presented at ID Week, one in five HIV-positive people experience diarrhea. Most of them self-medicate without their doctor’s knowldge by either restricting certain types of foods, making severe changes to their lifestyle habits, or worse, taking over-the-counter antidiarrheal drugs that cause constipation or have not been proven safe in people with HIV.
The study shows neither doctors nor their patients have taken a real step towards fixing the problem. As a result, diarrhea is seriously underreported despite the fact that 66 percent of healthcare providers say it’s the most troublesome adverse effect of antiretroviral therapy.
And surprisingly, doctor reports seem to contradict that of patient reports, stating that only 19 percent of their HIV-positive patients experience diarrhea and seven percent were treated with antidiarrheals, while patients reports say that 21 percent of them experience diarrhea and 10 percent were taking antidiarrheals.
The good news is there is hope.
A new FDA-approved antidiarrheal drug is on the market that relieves diarrhea specifically in HIV-positive patients, without jeopardizing drug interactions or causing constipation.
This fall, Napo Pharmaceuticals released Mytesi in tandem with two patient assistant programs. Part of their advocacy program is to increase awareness of this miracle drug among those living with HIV, so that healthcare providers know there is a better option other than over-the-counter meds.
"Diarrhea can be embarrassing, and it is not a topic that people usually bring up on their own," Napo Pharmaceuticals CEO and Founder Lisa Conte said in a statement. “People living with HIV typically don't report diarrhea to their physician because they have been dealing with it for a long time and they don't know their physician has anything new to offer them… We want to educate patients and their healthcare providers to let them know this product is available and hope to spark a conversation among those that are suffering from diarrhea.”
HIV specialist Dr. Roger D. MacArthur recommended that doctors be more forthright with their HIV-positive patients experiencing diarrhea, and need to check in with them at least every six months.
“For patients who may have been 'suffering in silence' for a long time,” MacArthur suggested, “doctors should change their question from 'have there been any changes in your bowel habits' to 'are there any issues you are having with diarrhea or loose stools that you want to discuss?' One of the greatest challenges is that there are many things that receive more focus in a normal office visit such as recent lab results and adherence to ART, so sometimes diarrhea is not discussed.”