A Promising Compound That Could Stop HIV AIDS. Why Is It Not Being Supported?

In chapter 18 of a book by Stefano Bertozzi referenced by famous health economist Robert H. Topel in his article in the Journal of Political Economy, several insightful comments about HIV research funding and needs for prevention in the face of a rapidly increasing HIV infection rate are highlighted.

The points made by Bertozzi et all about the lack of funding for research into preventive treatments for HIV are directly applicable to the difficulties I am facing obtaining funding and support from for a cheap sugar compound called cyclodextrin that has great potential to help stop the spread of HIV/AIDS.

Even though the U.S. President’s Emergency Plan for AIDS Relief and the Gates Foundation are funneling a  great deal of money into AIDS research, introduction of ameliorative therapy projects based on simple and available non toxic compounds such as hydroxypropyl beta cyclodextrin have not gotten past the initial screener. Why is further research into this simple sugar compound being held back?

Bertozzi et al attribute such resistance to compounds like cyclodextrin to the perception that preventive research is viewed as “less innovative scientifically” and “typically less experimental” by funding organizations.  They suggest earmarking such ameliorative therapy approaches to redress this imbalance.

The ameliorative therapy approach with hydroxypropel beta cyclodextrin also addresses the cited need for well-defined control or comparison groups necessary to measure the effectiveness of this preventive therapy.

It’s also interesting that a ready-to-use cheap formulation of cyclodextrin that would cost 10 cents per dose to deploy into Africa (!) and simply needs quick re-packaging doesn’t interest the funding organizations or the NIH.  It would seem that immediate relief for people and saving lives is far less exciting than the thought of basic research and making money.

It is hard to believe that a compound promising a stop to the method of transmission responsible for 80% of the HIV infections around the world does not create a compelling reason for funding and testing.   It would only cost $500,000 dollars to test cyclodextrin, the cost of caring for approximately one AIDS patient over their lifetime.  Surely Mr. Gates could direct $500,000 dollars at this sugar compound to see if it works before spending millions on something less effective?

Finally, there is money in cyclodextrin and very smart people are researching it.  The ability for HIV AIDS to assemble in the human body is directly tied to the Niemann Pick Type C cholesterol gene on Chromosome 18, one of the most important genes in the body (this gene is now tied to obesity!).   And look what hydroxy propel beta cyclodextrin is doing for my 5 year old twins, Addi and Cassi, who suffer from one of the worst cholesterol diseases on the planet.

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Cyclodextrin As A Therapeutic “Drug” For HIV AIDS, Niemann Pick Type C and other Viruses

Addi and Cassi’s first round of cyclodextrin infusions have been going smoothly at Renown Regional Medical Center in Reno, Nevada.   We’re now into our third day of continuous infusions of hydroxy propel beta cyclodextrin (HPBCD) into the girls’ bloodstreams and they don’t seem to be experiencing any negative side effects.    I feel as if it’s having a positive and immediate effect.  Addi was talking yesterday afternoon and stringing together more than one word — “I like my toys, I’m brave enough, I need your help, “Bye” to Dr. Hastings, and “Ad” for her name Addison.  Even Cassi came out with a few words - “Mommy, No.”     This is quite encouraging to us but we’re not yet sure if it’s a result of the cyclodextrin treatment.

Addi and Cassi’s blood work-ups have come back “normal” following the cyclodextrin infusions.  There was a slight elevation in both girls’ eosinophils after 24 hours but it was minor.   We also had to change Addi’s port access needle as it was not working properly and we were unable to draw blood.   Unfortunately, we had to re-install the needle on her chest without any numbing cream.  Ouch!

I found out this morning that researchers were looking at the same cyclodextrin (HPBCD) and Niemann Pick Type C disease back in 1996 — 13 years ago!   I received this information from a scientist in Europe and I almost had a heart attack when I read the scientific abstract.

Somehow cyclodextrin research as it relates to Niemann Pick Type C was not thoroughly pursued with all angles exhausted by scientists.   This simply can not happen again — not only for Niemann Pick Type C disease but for HIV/AIDS and potentially other viruses like Herpes that are inactivated and killed by cyclodextrin.

I worry about the future of cyclodextrin research.  We can’t count on pharmaceutical companies to research cyclodextrin or bring therapeutic products with cyclodextrin to people as they are focused on profits and patents on new drugs that take millions of dollars and years to make.   Cyclodextrin is an inexpensive and non-toxic compound that can be deployed tomorrow — far too EASY!   But the HIV/AIDS pharma companies should be watching cyclodextrin very closely.  I believe the smart ones will start investing into research and try and create new patents around cyclodextrin since the Niemann Pick Type C cholesterol gene/protein on Chromosome 18 is the culprit in HIVs ability to assemble itself in the human body.

It’s time that the National Institutes of Health (NIH) Office of AIDS Research or the Centers For Disease Control and Prevention or some other government agency steps in and redirects money into cyclodextrin research to study this potentially life-saving compound that has very broad applications.

I am also asking for help from private citizens and global foundations such as The Gates Foundation, The Clinton Foundation, Elton John AIDS Foundation, amfAR and One.org to step in and help by taking a closer look at cyclodextrin and it’s relationship to cholesterol metabolism and killer viruses like HIV/AIDS.   We must make sure cyclodextrin is properly tested as a therapeutic agent whether money can be made from it or not (which is can be!)

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