In the News – Stem Cells and Patient Advocacy

Top stories today, in my world:

1) “Stell Cell Breakthrough Helps 85% of Type 2 Diabetes Patients.” In a very exciting initial study in Argentina, implanted stem cells did just what researchers hoped they would do: they appeared to regenerate the destroyed Islet Beta Cells in the pateints’ pancreas. The patients were able to get off their various diabetes drugs, and the procedure went off without a single complication.

Very promising stuff. Now remember, this study was conducted on just 16 patients, so 85% would be 13 happy diabetics. Whether this will translate into success for millions remains to be seen.

The Medical News Today staff certainly thinks so: “According to some American researchers and diabetologists, this is the most important step toward the cure of diabetes since 1929, when Drs. Banting and Best discovered Insulin.” Why do I just feel like I’ve heard that before?!

2) The Washington Post reports on “Divided Loyalties” of patient advocacy groups like the ADA. The premise is that these large, established organizations may answer more to their financial supporters and advertisers than to their patient communities. The ADA site, for example, offers very little in terms of alarms about drug safety; you won’t learn the negatives from them. But does this make the organization unethical?

Funny you should ask, since I am quoted in the story. Some weeks ago, I talked to the reporter at length about this concept, and I stand by my conviction that the ADA and groups like it are extremelyOmbudsman_3 valuable to the patient community. They are our advocates for improved government policy, fair treatment in the workplace, and much more. They offer LOADS of worthwhile information, publish important books and organize successful fund-raising campaigns around the country. We need them. We appreciate them.

But do they act as ombudsmen for us? I don’t think so. And I for one really don’t know where to turn for this service, if needed. I guess we remain on our own if we have concerns about drug safety or a bone to pick with a pharma company’s policies or marketing. Unless you care to hire a lawyer.

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5 Responses

  1. Kirk
    Kirk February 7, 2006 at 2:18 pm | | Reply

    HJistorically Type 2 diabetics had functioning beta cells, they typically suffered from insulin which couldn’t work due to receptor issues, not enough insulin production or just plain insulin intolerance. I guess there are new issues I am unfamiliar with if beta cells cure Type 2 diabetes. This is good news since Type ones could definitely benefit from beta cells which work.

    As always Amy this is good info; keep up the good work.

    Captkirk

  2. underalms
    underalms February 8, 2006 at 7:44 am | | Reply

    I agree with your take on the Washington Post article. It’s barking up the wrong tree to expect the big disease advocacy groups to focus on treatment issues. They have other responsibilities, as you point out.

    There actually are other groups that keep an eye on drug safety that I talk about in my blog http://www.wheremostneeded.org.

  3. David Mendosa
    David Mendosa February 8, 2006 at 1:13 pm | | Reply

    Thank you for adding your excellent comments to the fine Washington Post article about organizations like the ADA. I especially liked your comment about taking what the ADA says with a grain of salt. In my book that goes double for its outdated diet recommendations.

  4. Colin Portnuff
    Colin Portnuff February 8, 2006 at 10:48 pm | | Reply

    Very interesting comment about the ADA. I was diagnosed with Type II diabetes in 2001, with a fasting blood glucose of 300. I completely turned my lifestyle around, lost 70 pounds, racewalked two marathons and ran one.

    Aside — yes, it can be done. Within a few months of starting my new lifestyle, my blood glucose was under control. My last HbA1C was 4.9. I have never taken a diabetes drug. I know that is not true for everyone, but it sure worked for me.

    I raised $10,000 for the ADA through my first two marathons. I was always impressed with what the association does for education and research, but appalled that there was no apparent patient services activity. In fact, all the association has ever done directly with me is ask for money.

    Then, in 2004, I was diagnosed with ALS, Lou Gehrig’s Disease. I sent one email, to a link I saw on a poster for a fundraising walk, and within an hour I had a telephone call from a social worker at the ALS Association. ALSA provides leadership for research and advocacy in the political sphere, but their focus is on patient services. They work with medical teams to create and certify ALS Clinics, multispecialty clinics where patients can receive the best, most compassionate care available. They organize and facilitate support groups for patients and families. They lend expensive equipment to patients who need it. They provide videotapes, books, and resource guides. They help with reimbursement and with vocational rehabilitation. They don’t know how to say “Sorry, you’ll have to go somewhere else for that.” They are always available to help. Staffed with a social worker and even a speech pathologist, my local chapter of the ALSA has been the most incredible help to me that I can imagine. They have exemplified everything that is good and wonderful in cause organizations, and provided an amazing contrast to the ADA, AHA and others.

  5. S R Ramakrishna
    S R Ramakrishna February 16, 2006 at 6:31 am | | Reply

    I am positively shocked that the media response to the Argentinian cure for Type 2 has been so low-key. I would think it ought to have made it to every newspaper in the world, and made it to Page 1, but all I have seen are one or two stray reports on the Net. Does this mean that the experiment wasn’t serious enough? It appears you don’t think much of the claim either. But why? Isn’t it something deserving a lot more attention and serious consideration?

    Ram

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