AIDS Activist Allen Huff dies of a HIV drug side effect

My friend, Allen Huff, died on Friday. He battled portal hypertension caused by Videx (DDI) and was not a candidate for surgery to repair the damage caused by that drug (read the FDA report that mentions the label change for the drug just last year:  FDA report on the side effect and label change for DDI )

It was very hard for me to see Allen die of wasting in front of my eyes since wasting syndrome has been my main area of activism in the past. The blood flow to his liver was restricted, so he was not able to absorb nutrients even though he ate constantly. His viral load was undetectable for many years and he was highly adherent and educated about treatment. He was so angry that it took so many years for this side effect to be mentioned. He had contacted BMS several times and they denied any indication that their drug could be involved in this problem.

Allen was only 51 and a kind soul that always found the time to tell people he loved them.  He worked as a volunteer in many HIV non profits and raised a lot of money for several of them. He had a lot of dreams of helping others. I am glad he had a lot of love around him in his last days. We celebrated his birthday with him a few days before his death and he was surrounded by his friends and family who were there to show their love. I am glad he was able to be conscious that day to receive it.

I am very angry that his life was taken away by a drug induced side effect and I hope no one else has to die of this slow death. I have received emails in the past from people who have the symptoms, but lost touch with them.

Early symptoms are unintentional weight loss, diarrhea, bloatness, fatigue, dementia that comes and goes (due to high blood levels of ammonia), and others. Liver enzymes are usually OK and no cirrhosis is seen. It took years to diagnose this problem in Allen, so it is important to be educated about this side effect so that any one you know who has taken DDI in the past gets early diagnosis by a liver specialist.

Allen Anthony Huff

Allen Anthony Huff, DC, 51, died at home after a lengthy illness, surrounded and comforted by family and friends, on June 9, 2011. His younger brother Bruce Huff preceded Allen in death. His devoted and loving partner Charles Wesley Gulick, his mother Grace Ann McNeill of Houston, and his father James Allen Huff, and wife Liz Young Huff, of Rapid City, South Dakota, survive him. His brother Christopher Huff and partner Andrea Gooldy and their son Christopher, of Atlanta Georgia, and brother Timothy Heckler, his wife Sharon and their daughters Alyssa, Sarah, and Isabel of Houston, Texas, also survive him.

Allen was born in Houston on June 6, 1960. He graduated from the Texas Chiropractic College as a Doctor of Chiropractic Medicine in 1985. In addition to his private practice, Allen was the Risk Management Director for the Spring School District for a number of years. He was also a hard working and most valued friend to the American Red Cross Protect Your Back Program where he gave 12,000 hours of volunteer service. For the Red Cross, he authored a Protect Your Back Course student book and instructors manual and personally taught the course to hundreds of other caregivers, physicians and EMTs.

Allen was a passionate advocate for HIV prevention and treatment. After his diagnosis in 1995, Allen became active with a number of national HIV/AIDS-related organizations including AIDS Alliance for Children, Youth and Families; Broadway Cares/Equity Fights AIDS, and the Gay Men’s Health Crisis. He published a number of articles on HIV and AIDS, including those for Poz Magazine and RITA. In Houston, Allen was involved with a number of HIV/AIDS nonprofits, most notably AIDS Foundation Houston and The Center for AIDS Information & Advocacy. For the past four years Allen served as a working board member for The Center for AIDS. Allen Huff will always be remembered for his love of life, his kind and gentle spirit and his fierce determination to take care of his own health while advocating and doing hands on care for others with the disease.

He deeply loved his partner Chuck, his family, his world wide extended family of friends, his much adored standard poodle rescue, Grant, world travel adventures (once being lost at sea and then shipwrecked by a typhoon on Norfolk Island, Australia) and the weekly dinners with the boys at Berryhill River Oaks, (amusingly known among those devoted compatriots as their Boo Hoo Lounge).

The family wishes to especially thank his personal caregiver, Ed Cervantes, his physician, Joseph Gathe, MD, and the Silverado Hospice staff and volunteers, along with his close buds for their wonderful compassion and care. These people made his end of life journey as serene and comfortable as it could possibly have ever been imagined. Allen knew that he was well loved and cherished and always returned that love without guile.

A memorial service will be held in the near future.

In lieu of flowers, donations in Allen’s memory may be made to The American Red Cross Houston, 2700 Southwest Freeway, Houston Texas 77098 and/or the Center for AIDS, 1407 Hawthorne St. Houston, Texas 77006.

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