When Grant Cobb was first diagnosed with HIV, the doctors gave him five years to live.
And this past year he celebrated his fifty-second birthday.
Cobb said that is thanks to the HIV (Human Immunodeficiency Virus) medication Didanosine, or DDI, which was first approved by the Food and Drug Administration on October 9, 1991.
“It was a dire situation 25 years ago,” said Cobb, a manager with the AIDS Committee of Ottawa and a long time survivor of the virus.
“We were dying.”
Scott Allen, a doctor in Alberta, said DDI works by blocking the HIV infected cells in the body so the virus can’t replicate. It blocks the enzyme that creates the virus, said Allen.
Cobb said Didanosine was part of the first drug cocktail he took. He remembered dealing with side effects that were “almost worse” than the symptoms from the virus.
“Your options were to take the pill and live with the side effects, or die,” said Cobb.
Dr. Phillip Berger is an associate professor at the University of Toronto. He said the doses for DDI in the early days were extreme and it was “not an easy drug to take”, with lots of lasting gastrointestinal and neurological effects.
But, he added, it gave people “some additional hope.”
“They were just pumping the drug into our bodies, trying to get to the virus,” said Cobb.
He added even though the drugs and the doses have changed dramatically over the years, older survivors of the virus who took DDI are still suffering the side effects.
Known by members of the community as the “buffalo hump,” DDI caused lipodystrophy; it took fat from parts of the body, like the face or legs, and deposited it elsewhere, most commonly on the neck or the stomach.
You can tell by looking at them if HIV survivors were on the drug, said Cobb.
Nowadays, it’s a combination of many medications- known as ART, or Antiretroviral Therapy- that is used to treat the infection.
Like its antiretroviral predecessor, ART functions by reducing the amount of HIV in the body, giving an HIV positive body the same chance as a healthy body to fight infections. It is the recommended treatment for all people today with HIV, regardless of how long they have had the virus or how severe their symptoms.
But the side effects of today’s ART, compared to that of Didanosine when it was first used 25 years ago, are drastically different.
Taking your drugs now is much less disruptive, said Cobb. “I haven’t thrown up from medication in almost a decade.”
He said it is hard to remember to take the medication because he doesn’t feel ill and the drugs don’t make him ill.
“I have to remember the cocktails are what’s keeping me alive!”
And as for a cure? Cobb is certain there will not be one in his lifetime. According to Cobb, pharmaceutical companies are making too much money from medication for them to make an HIV cure a priority.
Cobb said there are four thousand people living with HIV in Ottawa, and each one of them pays approximately three thousand dollars a month for medication.
“They are not in a hurry to find a cure,” he said.
But Cobb added if people are diagnosed early, their life expectancy “is the same, if not just a bit less,” than before they were diagnosed. He credits that to the medication and research of Didanosine.
“I wasn’t expected to make it to thirty-seven,” said Cobb.
“Didanosine, it changed the world we were living in.”
“We were living.”
Click here for a timeline of the HIV virus: http://www.webmd.com/hiv-aids/ss/slideshow-aids-retrospective
Documentation information for Jim:
- The link below is a timeline – in pictures- of the HIV virus that I got from webmd. It helped me contextualize the virus and gave me key facts and important dates that I did not know of beforeI started working on this story.
http://www.webmd.com/hiv-aids/ss/slideshow-aids-retrospective
- This link is from an article that was recently written by CTV about a new HIV treatment drug. Although this article isn’t directly related to Didanosine, it furthered what people were telling me about the evolution of HIV treatment since 1991 and the approval of DDI.