(no subject)
Dec. 16th, 2004 10:39 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
theweaselkingA pregnant Tennessee woman who enrolled in federally funded research in hopes of saving her soon-to-be-born son from getting AIDS died last year when doctors continued to give her an experimental drug regimen despite signs of liver failure
Family members of Joyce Ann Hafford say the 33-year-old HIV-positive woman died without ever holding her newborn boy. They also said they never were told the National Institutes of Health concluded the drug therapy likely caused her death.
The family first learned of NIH's conclusions when The Associated Press obtained copies of the case file this month. For the past year, they say they were left to believe Hafford, of Memphis, Tenn., died from AIDS complications but began pursuing litigation to learn more.
"They tried to make it sound like she was just sick. They never connected it to the drug," said Rubbie King, Hafford's sister.
"If it were the disease, solely the disease, and the complications associated with the disease, that would be more readily acceptable than her being administered medication that came with warnings that the medical community failed to get ... to her."
Family members of Joyce Ann Hafford say the 33-year-old HIV-positive woman died without ever holding her newborn boy. They also said they never were told the National Institutes of Health concluded the drug therapy likely caused her death.
The family first learned of NIH's conclusions when The Associated Press obtained copies of the case file this month. For the past year, they say they were left to believe Hafford, of Memphis, Tenn., died from AIDS complications but began pursuing litigation to learn more.
"They tried to make it sound like she was just sick. They never connected it to the drug," said Rubbie King, Hafford's sister.
"If it were the disease, solely the disease, and the complications associated with the disease, that would be more readily acceptable than her being administered medication that came with warnings that the medical community failed to get ... to her."
(no subject)
Date: 2004-12-16 05:30 pm (UTC)I suspect MOST mothers with AIDS would agree.
(no subject)
Date: 2004-12-17 05:41 am (UTC)HIV is not a fatal disease any more. It's messy and inconvenient and permanent and transmissible, but it doesn't kill you.
Liver failure *does* kill you - and malpractice, such as doctors giving you an experimental drug, seeing signs of liver damage from a drug they KNEW carried risks of liver damage, and continuing the drug regimen *without telling you*, also kills you.
Now, I realise this is difficult to comprehend without breaking your treasured insulation from real people with real problems, but when doctors kill you and your son through *negligence* while experimenting in an attempt to cure a non-fatal disease, most people who aren't keyboard-ninja "Libertarians" consider this a bad thing.
(no subject)
Date: 2004-12-17 08:58 am (UTC)HIV is still a death sentence.
The latests drugs - at costs of thousands of dollars a month - extend the onset of AIDS from HIV infection, and slow the progression of AIDS. But they do not cure. There is a *possible* vaccine, it has yet to see clinical trials.
Now, it is not malpractice when someone in an experimental drug study dies of the expeimental treatment. It's part of the risk one takes with an experimental regimen. The realative's assertion that the patient was not told of the risks, and the impending liver failure does not mean that the patient was not told. It was the patient's business whether she shared those grave concerns with her family - and appearantly, she decided not to. Medical Privacy REQUIRES that the patient be the only one to tell anyone not involved directly with treatment.
I feel it is much more likely that the family was merely ignorant of the true situation, at the patient's request, than that a medical experimenter in a clinical trial would fail to fully inform their study subjects of risks, or monitor the risks. It is a huge negative to have people die during your clinical trial, and makes FDA approval very much more difficult. It is much less difficult to explain that certain members of your cadre had to be removed due to complications.
So, my friend, I am not ignorant or shuttered. I work with a major research hospital, and I just went over the federal privacy requirements yesterday.
(no subject)
Date: 2004-12-17 09:03 am (UTC)And then they should NOT have continued treatment, regardless of her wishes.
And then they should NOT have lied to the family about the cause of death, or the results of the investigation into the death.
(no subject)
Date: 2004-12-17 01:28 pm (UTC)Should the doctor have been more on the ball? Yes.
Is he guilty of malpractice in the woman's death? Probably not.
Is it something I'd like to happen to a loved one? Deinately not.
The only semi-unfortunate thing about this story, from my point of view, is that the baby lived. Society would be better off with fewer people, especially with fewer idiots who cannot be bothered to look up information on drugs they are taking.