Aspies For Freedom

http://www.msnbc.msn.com/id/8702244/

  MSNBC.com

New York may begin tracking diabetes patients
Proposal to create database stirs controversy over medical privacy rights
The Associated Press
Updated: 8:47 p.m. ET July 25, 2005

NEW YORK - At least half a million New Yorkers have diabetes, many of them at risk for blindness, kidney failure, amputations and heart problems because they are doing a poor job of controlling their illness.

The question is, how much privacy are they willing to give up for a chance at better health?

A century after New York became the first American city to track people with infectious diseases as a way to halt epidemics, officials here propose a similar system to monitor people with diabetes, a non-contagious foe.

Conceived after a sharp rise in diabetes deaths over the past 20 years, the plan would require medical labs to report to the city the results of a certain type of test that indicates how well individual patients are controlling their diabetes.

“There will be some people who will say, 'What business of the government is it to know that my diabetes is not in control?'" said Dr. Thomas R. Frieden, the city’s health commissioner.

$5 billion a year to treat
The answer, he said, is that diabetes costs an estimated $5 billion a year to treat in New York and was the fourth leading cause of death in the city in 2003, killing 1,891.

By pinpointing problem patients, then intervening ever so slightly in their care, Frieden said the city can improve thousands of lives. “I don’t think we can afford not to do anything,” he said.

The Board of Health vote on the proposal isn’t likely until at least September, but it has already attracted attention from other public health experts and privacy advocates.

The list of illnesses reported to public health authorities has grown over the years, but it still is almost entirely contagious diseases, like HIV, or conditions related to environmental toxins, like lead poisoning.

Diabetes is different, threatening no one but the people who have it.

“This isn’t smallpox,” said James Pyles, an attorney who represents health care groups concerned with medical privacy. “The state, or the city in this case, does not have a compelling interest in the health of an individual that overrides that individual’s right to privacy.”

Pyles praised the intent of the program, but said unless diabetics are asked for their consent, it would be “an outright violation of the constitutional right to privacy” for the government to obtain their identities.

Patients can opt out later
The city’s program wouldn’t initially get consent to collect data, but would allow patients to opt out later. The database would also be tightly controlled, off limits to anyone but department staff, the patients and their doctors, health officials say.

Over time, doctors could receive letters, telling them whether their patients have been getting adequate care. People who skip checkups might get a note from their doctors, reminding them of the dangers of untreated diabetes.

The plan is akin to the surveillance system put in place in 1897 to fight tuberculosis. At first, doctors were outraged they had to report TB cases to the government, but it became a model after deaths plummeted.

Dr. Nathaniel Clark, vice president for clinical affairs of the American Diabetes Association, said the surveillance system could be a great tool for doctors who find it difficult to track patients over long periods.

Currently, he said, people who aren’t aggressive about their care can easily fall through the cracks. Some switch health care providers, and many people living in poor neighborhoods where diabetes is common don’t have a regular doctor.

Dr. Paul Simon of Los Angeles County’s public health department, said other big cities could follow New York’s lead.

“Some people are uncomfortable with public health departments expanding their scope beyond infectious disease, but I would say we have to do it,” he said. “Chronic disease really accounts for the major portion of years of life lost to illness, these days.”

A violation of privacy?
New York’s program would involve collecting the results of A1c tests, which indicate blood glucose control over a few months, unlike the daily glucose tests diabetics give themselves. The A1c test is given for both Type 1 and Type 2 diabetes, the latter linked to obesity and accounting for about 90 percent of American diabetics. The program would cost between $1 million and $2 million a year, the health department said.

Dr. Amy Fairchild, an expert on public health ethics at Columbia University, said disease monitoring programs have historically been able to overcome privacy worries if the health threat is sufficiently frightening.

“We respond with surveillance when we believe something has reached epidemic proportions,” Fairchild said. “And this may fit the profile. Have we become a nation of obese people who are all going to get diabetes?”

The program’s success, she said, may depend partly on how patients respond. “It’s not necessarily that someone has that information. It’s that they’re pestering you. 'The next thing I know, you’ll be telling me what I can and can’t eat,”’ she said.

Nationally, diabetes is the sixth leading cause of death, according to the Centers for Disease Control and Prevention. It afflicts about 18.2 million Americans.

Sandye Poitier-Johnson, 57, a public school principal in Harlem who was diagnosed with diabetes a few years ago, said most people could use help monitoring their condition.

“People say, diabetes is serious, but they don’t take it seriously,” she said. “I wouldn’t think that this was Big Brother or Big Sister watching me. I would welcome the help.”

She urged the city, though, to get patient consent first. “There is enough privacy invasion already in our society,” she said.
© 2005 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

© 2005 MSNBC.com

URL: http://www.msnbc.msn.com/id/8702244/

There is a very scary recurring theme here.


first they state the money then how oh people are making the best decisions for themselves. IOW they are incapable of making the best decisions for themselves.


Now who is next. Autistics who take drugs are not "taking" care of them selves????

That's true about discrimination and losing insurance as that happened to my aunt when some doctor mistakenly wrote in her records that she had emphysema, she lost insurance because of a major screw-up. She was able to go with another company, but it just shows how discriminatory the insurance industry is when it comes to people with any disease.

As far as diabetes goes, I have a family history of the disease so I'm doing everything I can to make sure I don't get the disease by taking care of myself before it hits through excercize and a healthy diet. I also drink coffee, as that has been shown to help reduce the risk of type 2 diabetes.

Because of PTSD, my insurance is even more expensive, and I even had a major HMO turn me down because of it when I was looking into a plan. Fortunately, the company I was with since I was a teen continued to cover me, as there are laws that state that any mental illness must be covered if you were on the insurance.

Yes, what is poutine, M? Is it anything like icecream?

Some of the goverment panic about major health problems is a bit worrying. We have it in NZ in a small way. No one is going to track anyone yet. But there is a growing type 2 diabetes problem, here. I am sure it is due to more than just the food we eat. There are many different cultures and different people have different nutrient needs. Sometimes island and asian cultures come to a western country and eat the food and it is bad for them because they no longer have their own food and environment to move in.

But then sometimes i wonder if the western countries are turning into places to get illnesses associated with excess material goods. I want to run very far away into the rural areas or to the sea. it is very easy to get things but very hard to get what is good for oneself.
becca

I'd like to know the statistics of how many diabetics in the past ten years have gone mad, because I probably would with all the finger-pricking and insulin injections and this and that and countless other stuff I have never heard about!

Still, what does this story have to do with autism?

Oh.

This article is indeed a great concern. It would be a great concern even if it only had relevance to diabetics, but I believe it has relevance to everyone, because it shows how some governments have ambitions to usurp the role of medical professionals while not respecting patient privacy and rights in the way that the medical profession is expected to behave.

It shows how governments might be tempted to trample on the rights to privacy and autonomy of it's citizens in order to save money in healthcare. It is clear that the costs of healthcare will become a huge burden as the population ages, so governments might be tempted to resort to drastic and unethical measures to minimize the costs. No government seems to want to solve the problem of increasing health care costs by challenging the unecessary health budget costs from disease-mongering and aggressive promotion of marginally effective drugs by the obscenely wealthy and powerful pharaceutical corporations. That's where lots of money could be saved, not from harassing the poor patients at the bottom of the heirarchy.

The whole issue of government agencies harassing patients to make them comply with public health initiatives has particular resonance with me at the moment. I recently refused to fill in an unnecessary and intrusive questionnaire when I was attending a health service recently. It had nothing to do with legitimate public health concerns such as infectious disease, it was a plain and simple invasion of my privacy and I thought it was a case of medicos aggressively and intrusively looking for new people to categorise and control as patients. I was told some very questionable and I think deliberately deceptive information to try to trick me into complying, but I refused. I was asked 2 more times by two other people. That is harassment by anyone's definition. After many years of incompetence, neglect, carelesness and bullying from the health professions I have very little capacity for trust left with regard to these people, and now this incident has caused any remaining trust and goodwill of mine evaporate into the atmosphere.

Good for you!!! Lili

I dream of getting out of the system so i cannot be tracked by anything. In this age of technology we all leave a trail.
The more trails we leave it seems logical our future movements will be predicted and controlled by others.
Not just Healthcare, although this would be the major one, because everyone needs it at some time.
I'm getting just a little paranoid. But with good reason.

Don't you dream of absolute self suffiency? It would have a price, but look at what might happen in the future?
Becca

I have a suspicion that a desire to lead a self-sufficient lifestyle might be quite a common thing amongst aspies. I know that my husband and I find the idea very attractive but unfortunately unaffordable. Often when my husband opens a bill for power or water, or whenever the power goes out, or whenever our neighbourhood appears to be an especially dysfunctional and crime-ridden place, my husband expresses his wish to go bush and be self-sufficient. He even says he wishes there was some planet that we could migrate to to get away from all of the @#$%heads on Earth. If that isn't an autistic desire, I don't know what is!

Thats good. this isnt that kind of forum !!
:roll:

:lol: I'm sure if we ever went on that TV show in which wives are swapped around, it would only end in tears (and tantrums)! :lol:

that is an extraordinary picture in my head  :shock:  i am trying to think of a similarly extraordinary foodstuff.
I do like very fatty fish. i like all of the fish. even the cartilage and eyes. i like marrow in chicken bones. i  like food i can interact with. probably i could eat things that noone else would but which are very logical to eat if we should eat healthy. i like crunchy things.
Insects are much appreciated in many parts of the world but in the western world we do not eat them.
Strangely enough we also have high rates of diabetes and cardiovascular disease.
hmmmm....
There. a solution to the worlds health problems.  :grin: Interesting food that you have to work hard at digesting.
becca

Diabetes type 2 is also the end result of ignorance and it can be managed without medication. Type 1 needs medication. So tracking diabetes patients would mean tracking people who have an illness that have many variables involved and the attempt to put all those people in a predictable box to manage them would not work to lessen the disease. Maybe the diabetes would disappear but it would manifest as another problem becasue the causes are not addressed.
becca

I thought diabetes was genetic and ran in families, thats why  doctors always ask you if you have family members with diabetes.

It has increased, but that could certainly be down too a more sugary and rich diet, starting in childood.