Monday, 10 February 2014

Who has seen the Dallas Buyers Club?

Dallas Buyers Club & CCSVI. #MSBlog #MSResearch

"I saw the Dallas Buyers Club yesterday. It is a movie about an AIDS patient Ron Woodroof, who smuggled unapproved pharmaceutical drugs into Texas when he found them effective at improving his symptoms. He started distributing them to fellow AIDS sufferers by establishing the eponymous "Dallas Buyers Club" whilst facing opposition from the FDA. Ron Woodroof goes to extreme lengths to access anti-HIV drugs even bribing a hospital worker to access AZT. It is a very touching movie and captures the esprit de corps of the AIDS activists at the time."

"The story has many parallels to the book "With a Little Help from My Friends: A Love Story"; this is Charles Fox's autobiography. Charles had MS for over 30 years. In his book he described his quest to get his MS treated and how he tries to get hold of interferon to treat himself before it was licensed and tested in MS."

"The following is an excerpt of the Chapter 24 from the book that tragically appears not to have been formally published."

Charles Fox












With a Little Help from My Friends: 

A Love Story 

by Charles Fox 

Chapter 24: Interferon

...... My main preoccupation, as I embarked upon the quest for interferon, was the morality involved. I had never been very good at this, maintaining, as I had, an outsider's position, bordering therefore on antisocial. I attributed this attitude to two things: being a writer and therefore an observer, and being English and therefore a foreigner......

..... Getting interferon was going to involve duplicity, subterfuge and possibly some technically criminal behavior. After considerable thought, I gave myself permission to do whatever it took, provided that I was not depriving any other individual of what I sought for myself. Do anything you like, just don’t scare the horse.....

..... Just going off to some storefront neurologist to get interferon would be like going to the Coast Guard to ask for the use of an atomic sub. In order to handle an experimental drug, an accredited researcher must first obtain an Investigational New Drug number (IND) from the Food and Drug Administration, a whole medicine show unto itself. Accredited researchers tended to be obsessive by nature. They were the Nobel Prize winners who had syndromes and diseases named after them. I imagined they rarely find time to talk to each other, let alone to patients in wheelchairs. But, I reasoned, with someone from the media, especially the responsible media, it would be a different story. Publicity could mean money, and money for research was drying up, with more and more researchers competing for less and less cash. I figured if I wished to speak to researchers riding the crest of the wave and I didn’t have the money to pay them myself, I could go as the man from the media. I went to my New York agent and asked her to get me an assignment from a good magazine. This way I could find out for myself what the real story was and whether interferon was really worth chasing. If it was, then the first choice would most probably be to get into Jacobs's study in Buffalo, or one trying to duplicate his findings. My agent got me an assignment from Harper's Magazine. Its editor, Michael Kinsley, called from New York. He was excited about the idea. He said at once they would call it 'Waiting for Interferon'. I had no intention of writing the piece. I didn’t need the money and could see Kinsley and Harper's would be exhaustively demanding. I just wanted to get the information...... 


If you are a subscriber you can read Charles' account in his Harper's Magazine article: 


"The Dallas Buyers Club and Charles Fox's account raises the issue of how drug regulation and in particular the FDA works. It is clear the FDA has a mandate to protect the citizens of the US from harmful drugs, however, the process of drug development is so painfully slow that if you have diseases such as AIDS or MS the delays in getting effective drugs to market means that many people died or became disabled waiting, sometimes in vain, for access to the relevant drugs. Often the quest  to access effective treatment brings clinicians and/or scientists into conflict. On reflection I acknowledge that CCSVI has many similarities to predicament of AIDS sufferers in the  Dallas Buyers Club and Charles Fox's quest to get himself treated with interferon. I am much wiser for seeing the movie and I recommend it to you all."

26 Mar 2012
I heard the sad news, on Friday, that Charles Fox passed away in Bolinas, California. Condolences to his daughter and family. I feel very sad. Plans were quite advanced for me and my family to take our summer holiday this ...

P.S. "I have contacted Charles Fox's daughter and have asked her permission to publish the full chapter 24 on-line and to help get his book published online."

5 comments:

  1. Maybe someone should reopen a New York and Dallas Buyers Club to import Lemtrada and Cladribine into the USA from Canada and Mexico for people with MS who want an induction therapy?

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  2. Another lovely post; I would be very interested in reading his book.

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  3. Great movie! Let's celebrate people like Ron Woodroof (and Charles Fox); what would society be like without them?

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  4. You wouldn't need a Dallas Buyer's Club for induction therapy because you wouldn't need to take it every day. You could just take a week off work and go to Mexico. For me, what's missing is good guidance on whether I'm a good candidate for the drug, who in the US could monitor me after treatment (if I am a candidate), and how to find legitimate medical professionals and facilities in another country.

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