Local Heroes

I know there are many unsung diabetes heroes (and heroines) around the country — people who’ve devoted their lives to helping others with this potentially devastating disease. Two come to mind, leading the fight in some of the most disadvantaged parts of the country.

Printcrafter First off, there’s Wil, a Type 1 himself who’s suffered from severe hypoglycemic awareness and an early D-blogger who’s now become the Diabetes Coordinator at the nonprofit Valley Medical Center. He wrote to me recently to report that at this federally-subsidized community health center serving about 1,000 square miles of “rural dirt poor” northern New Mexico, state funding for test strips for indigent patients has been cut back drastically. He explains that many drugmakers offer what something called PAP, which stands for Patient Assistance Program. The folks at Amylin and Novo have been very good about offering free product to qualified PAP patients, he explains.

“But no PAP for test strips. No generic for test strips… God help you if you are working poor with or without insurance,” Wil writes. They’re still paying nearly a dollar per strip for the one thing his patients need most. And what good are all the drugs if you can’t monitor your BG levels?

Wil and his supervisor have started a letter-writing campaign to senators, state authorities, and the regional advocacy director for the ADA. From the latter, he was shocked to hear back that “more and more insurance companies are re-classifying test strips as Durable Medical Equipment (DME). Many insurance policies only cover 50% of the retail costs of DME; and many have an out-of-pocket deductible separate from the main policy.” Aargh!! But Wil keeps up the good fight, despite the odds. Kudos to you, Wil.


Then, in rural South Carolina, there’s Florene Linnen. I wrote all about her in this month’s Straight Up column at dLife. She’s a 65-year-old woman with an amazingly vital spirit and a natural knack for advocacy. She helped found a community diabetes program in rural Georgetown, SC, where diabetes is rampant and amputations and dialysis used to be as common as the flu.

She’s devoted her life to visiting poor patients in their homes and churches to educate them about diabetes. She’s also become a voice for their concerns to the Powers That Be. She recently outlined some of the biggest hurdles her diabetes-ridden community faces:

1) “The doctor doesn’t talk to me in a way I can understand. He says, your A1c is high, but what is A1c and what does it mean to my health?”

2) “We’re hurting for money. The doctors say patients don’t follow instructions. But if people here have to buy a vial of pills for $50, or buy shoes for their kid, two to one, they’ll buy the tennis shoes.”

3) “The doctors don’t listen. They rush you in and out.”

4) “Eating right? That’s hard, just to afford it. If a loaf of wheat bread goes for $3.19, and somebody sees a big pack of cinnamon buns for $1.49, they’ll take the buns most of the time.”

Read the column for more details on each.

Even as we web-savvy folks are breaking new ground with all sorts of Health 2.0 applications, numerous communities suffer from the very basics of poor diabetes care. There’s so much work to be done. We need more Wils and more Florenes in this world. Thank you to everyone who’s active on a community level.

btw, I do hope that part of my involvement with the emerging Diabetic Connect community will be reaching out to these communities where diabetes hurts the most — not just with web tools, but with something more tangible to help them get their health on track.


10 Responses

  1. Cindy Swanson
    Cindy Swanson April 7, 2008 at 7:04 am | | Reply

    They sound like two very cool people. Thanks for profiling them.

    I’m sometimes surprised at the lack of knowledge that other diabetics have. Where I live, newly-diagnosed diabetics are referred to diabetes educators by their doctors. I met with them several times over the first several months after my diagnosis, and they made sure I was well-versed in every single aspect of managing my Type 2 diabetes. They made sure to let me know that they were only a phone call away after the education was over, should I have any questions. I feel blessed to have been given that good start in learning how to manage this often confusing condition.

  2. Barbara
    Barbara April 7, 2008 at 5:20 pm | | Reply

    I know–in my work as a CDE, there’s no point in giving away a free meter if the PWD has no way of affording the strips. A couple of thoughts: Accuchek has a new strip assistance program worth checking out. Also,the Accuchek Active uses a cheaper cost strip. (I don’t work for them…no conflict of interest, just what I know.)

  3. Hans
    Hans April 7, 2008 at 10:32 pm | | Reply

    http://www.betachek.com/new_glucoflex.htm better than nothing and as these strips are easily cut in two without spoiling their funktion you would get a test for probalbly less than 20 Cents :-)
    (0,11 Euro here in Germany)

  4. Christine
    Christine April 7, 2008 at 10:34 pm | | Reply

    Abbott has a PAP, I’m almost sure.

  5. Felix Kasza
    Felix Kasza April 7, 2008 at 10:53 pm | | Reply

    Strips: Bayer has a “patient compliance program” — it helps patients be compliant by offering a 30% discount on strips. Note that the packaging is different (says “patient use only”), so it’s a different product, and a pharmacy has to carry or order it. One source: http://diabeticexpress.com/, look for the Ascensia Contour strips — less than $30 per 50 strips.

    Hurried doctors: Thank Medicare for that.

    Money is indeed a problem for many people. But sometimes it’s not the question of $50 for meds or $50 for the kids’ shoes — I see too many people who complain about a copay (or worse, about the $4 Walmart charges for most generics) while smoking and talking on the cell phone.


  6. Sarah
    Sarah April 9, 2008 at 12:05 am | | Reply

    I hate to say it, but people simply don’t want to listen. How much can we baby dumb and lazy people? Sure we give them handouts to keep them alive, but what do we do with them after that?

    Since when does healthy food cost more in ALL cases? This is a myth that always seems to reappear so people can whine that they have no choice but to eat chips for dinner. People have the CHOICE to buy crap or buy healthy stuff.

    I’m going to assume there was a typo, and the bread is question was “whole wheat”, not “wheat”. ALL commercial bread is made from wheat, with the exception of speciality gluten free rice bread. Since when is bulk brown rice, bulk plain oats, canned tuna, canned beans, bagged frozen veggies, bulk lentils and other pulses,low fat milk, etc. “expensive”?!

    These people are probably looking for processed “diet” foods instead of using their brain. They obviously don’t WANT to eat healthy, or need to take a remedial nutrition course. It is no wonder that most of the workd sees Americans as dumb. Filled with poor ghettos, minories, and soaring Type 2 diabetes rates.

    The fact is, I bet 90% of these Type 2 diabetics would not even HAVE the disease or have any trouble managing it enough to NEED medication and frequent testing if only they ate a healthy diet and exercised.

    It’s really that simple in most cases.

    Sorry for the rant, but adding more drugs, devices, and other such complications to diabetes care is NOT a viable solution for these people. If a person cannot understand basic nutrition or label reading, how to you expect them to manage adjusting medication to glucometer results? Come on now.

    1.) Poor people on Welfare should be given food stamps that can only be used for healthy food. No food money cheques. Period. I have seen so many poor people with $150 Nike running shoes eating McDonalds it’s ridiculous.

    2.) Low income working poor should get tax rebates for all receipts of healthy food purchases, or some sort of program similar to above.

    3.) All diabetics should have a mandatory education plan, and those who do not follow through without a great reason should not receive any healthcare. Why should tax dollars go into a program that people will not follow? Let them die if they refuse to help themselves. Survival of the fittest has turned into helping the weak survive and reproduce as much as possible. Now our current generation of children is having heart atacks in their 30′s because of the Type 2 diabetes and obesity epidemic…

    No one ever handed me anything. And I can assure you that my life is hard. But those who survive do it because they are smart and determined. Again, how much can we baby people who are too slow or refusing to help themselves? Should we put them in special ed programs or jails?!

  7. Sarah
    Sarah April 9, 2008 at 12:11 am | | Reply

    P.S. Sorry for my typos (it’s late!) and sorry if I’m offensive. But that’s how I feel after reading this and I think I speak the truth.

    Where I live, poor people DO have access to healthy food. But they often*choose* not to use those programs in favor of eating cheap fast food. They *choose* this lifestyle, and then we have to pick up the pieces after they fall ill. It IS possible to eat healthy for less.

    It’s not right.

  8. Cara
    Cara April 9, 2008 at 7:23 pm | | Reply

    When I lost my job and health insurance right about a year after I graduated college, I was stuck with choosing between taking good care of my diabetes and just staying alive with my diabetes. The PAP helped me greatly with insulins, and for that I am very very thankful, but I agree: “What about test strips!” Basically I was just guessing and hoping I was right. Depending on what little bit of money I could scrape together to buy a box of 50 and hoping it would last me for a month. Now I use 300 per month.
    Something does need to be done about test strips. You need insulin to stay alive. But you need test strips to help know how to give the insulin.

  9. Kelly
    Kelly April 12, 2008 at 7:27 pm | | Reply

    All of (us) subscribers have to keep on the insurers. There is no way strips are durable, the policy usually has definitions including the criteria for DME. I fought my insurance when they called sensors DME (they are disposable). They told me the problem initiated with the manufacturer /distributor who coded it that way.They are no more durable than infusion sets. In the end I won.

  10. » Handiest Little Handbook Ever for the “Born Again Diabetic” - DiabetesMine: the all things diabetes blog

    [...] from our long-time D-blogging buddy Wil Dubois, author of Life After Dx. Wil is also something of a local hero as far as I’m concerned, as he is a hard-working Diabetes Coordinator at a nonprofit medical [...]

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