New Survey Finds People Living With HIV With Diarrhea Often Suffer in Silence
A change in the way doctors and patients talk about symptoms could better address this neglected comorbidity in HIV.
The following press release was published today. Full disclosure: I participated in the recruiting of volunteer respondents by using my social media accounts, and advising the company on potential questions in the survey. This is not a paid post, but again I do consult for this company on using digital and social media and interacting with patients/influencers—since that’s what I do for a living. I’m required to tell you this, but look, the survey results say anything I would want to say. Ya heard me? ?
Napo Pharmaceuticals, Inc. (Napo), a human health company developing and commercializing novel gastrointestinal prescription products from plants used traditionally in rainforest areas, and a wholly-owned subsidiary of Jaguar Health, Inc. (NASDAQ: JAGX) (Jaguar), today released the results of a survey of 350 people living with HIV and AIDS on “Talking to Your Doctor About Symptoms”. The nationwide survey was sponsored by Napo and developed with input from HIV advocates Tez Anderson, Josh Robbins and David Duran.
“These results demonstrate that chronic diarrhea continues to be a substantial complaint of HIV/AIDS patients, and particularly in the growing group of long-term survivors”
The survey shows diarrhea remains prevalent in those living with HIV/AIDS, as 27 percent of respondents living with HIV/AIDS reported that they currently have diarrhea, while 56 percent reported that they have had diarrhea in the past. In addition, 79 percent of those with diarrhea reported having diarrhea for more than a year, and 61 percent reported having diarrhea for more than five years. Interestingly, while 72 percent said their doctor asked them about symptoms in general, only 31 percent said their doctor asked about diarrhea without them bringing it up first.
Highlights of the survey include:
- Long-term HIV survivors (individuals who have lived with HIV for 10+ years) have a higher prevalence of diarrhea, with 32 percent reporting they currently have diarrhea. In addition, 61 percent of long-term survivors reported suffering with diarrhea for at least five years.
- Of people living with HIV (PLWH) who have had diarrhea, less than half said their doctor asked them specifically about diarrhea.
- 30 percent of those currently experiencing diarrhea said they never discussed diarrhea with their doctor and/or reported feeling that the doctor dismissed or “blew off” their issue with diarrhea. Of all survey respondents, 19 percent who have ever experienced diarrhea said they never discussed diarrhea with their doctor.
Only one percent of survey respondents who currently have diarrhea reported being told by their doctor about Mytesi® (crofelemer), the only drug that has been specifically studied in and FDA-approved for symptoms of diarrhea in people living with HIV.
Tez Anderson, Founder of Let’s Kick ASS (AIDS Survivor Syndrome), commented on the survey results: “That so many PLWH reported being asked about general symptoms, but not about diarrhea, is troubling. After living with diarrhea for decades, I think long-term survivors accept it as a fact-of-life, and they don’t bring it up with providers. It’s important that PLWH inform their doctors it is an issue and to ask for non-opioid based treatment.”
“These results demonstrate that chronic diarrhea continues to be a substantial complaint of HIV/AIDS patients, and particularly in the growing group of long-term survivors,” stated Lisa Conte, Jaguar’s president and CEO. “Diarrhea can have a severe negative impact on PLWH, and we are striving to ensure that people living with HIV and their healthcare providers are aware of, and have access to, Mytesi, and that they are effectively communicating about HIV/AIDS-related diarrhea.”
To view the full report of the survey results click here: http://www.enoughdiarrhea.com/surveyreport/SymptomSurveyReportNov2017.pdf
Launched by Napo in October 2016, Mytesi is the only antidiarrheal studied in and U.S. FDA-approved for the symptomatic relief of noninfectious diarrhea in adults living with HIV/AIDS on antiretroviral therapy (ART). Mytesi is a prescription treatment for diarrhea that works differently, by acting locally in the GI tract to normalize the flow of water. Mytesi does not have drug-drug interactions with ART and has side effects that are similar to placebo.
To learn more about what you can do about HIV/AIDS-related diarrhea, visit http://mytesi.com.
Napo sponsored the nationwide survey of 350 people living with HIV/AIDS and developed it with input from HIV advocates Tez Anderson, Josh Robbins and David Duran. Survey participants were recruited through social media channels, HIV advocacy networks and Facebook advertising during the months of October and November 2017.
Mytesi® (crofelemer) is an antidiarrheal indicated for the symptomatic relief of noninfectious diarrhea in adult patients with HIV/AIDS on antiretroviral therapy (ART). Mytesi® is not indicated for the treatment of infectious diarrhea. Rule out infectious etiologies of diarrhea before starting Mytesi. If infectious etiologies are not considered, there is a risk that patients with infectious etiologies will not receive the appropriate therapy and their disease may worsen. In clinical studies, the most common adverse reactions occurring at a rate greater than placebo were upper respiratory tract infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%).
More information and complete Prescribing Information are available at Mytesi.com. Crofelemer, the active ingredient in Mytesi®, is a botanical (plant-based) drug extracted and purified from the red bark sap of the medicinal Croton lechleri tree in the Amazon rainforest. Napo has established a sustainable harvesting program for crofelemer to ensure a high degree of quality and ecological integrity.
About Napo Pharmaceuticals, Inc.
San Francisco-based Napo Pharmaceuticals, Inc. (Napo), focuses on developing and commercializing proprietary human gastrointestinal pharmaceuticals for the global marketplace from plants used traditionally in rainforest areas. Napo is a wholly-owned subsidiary of Jaguar Health, Inc., a commercial stage natural-products pharmaceuticals company focused on developing novel, sustainably derived gastrointestinal products for both human prescription use and animals on a global basis.
For more information about Napo, please visit napopharma.com. For more information about Jaguar, visit http://jaguar.health.