March of Dimes knows it messed up, and is trying to earn our trust back

After my last blog post on the subject of the Makena controversy, I got an email from Doug Staples, SVP of Strategic Marketing & Communications for March of Dimes, asking if he could try to answer some of my outstanding questions about the organization, its role in the controversy, and its response thus far.

I called Doug this afternoon and we had a nice chat. He put forth the premise that getting FDA approval of the drug to make it an official use, allow it to be mass-produced for all patients, and allow it to get on formulary with all plans is a good thing. I agree, as I have since heard of women who were not able to get doctors to prescribe 17P because it was not an approved use of the drug, or were unable to get it because it was not on formulary (and had no choice in changing doctors because there were no other doctors in their rural areas). March of Dimes figured that there would be a price increase, but they didn’t realize that it would be as astronomical as it was.  Doug also admitted that they had put too much stock in K-V’s assurances that its Patient Assistance Program would ensure that all women who received prescriptions for Makena would be able to afford it.

Regardless of whether or not I think that this indicates a realistic worldview by the March of Dimes analysts, it at least provides a window into what their thought process was.

Now that I had determined what the purported reasons for their participation in the debacle were (which, in my last post, I labeled as “poor strategic insight” and “naïveté”), I turned to their limp, delayed reaction after the price became known. Doug told me that March of Dimes had still been going on the assumption that the Patient Assistance Program would take care of the cost for mothers who needed coverage, and that they had tried working behind the scenes to address the problem, but had not been successful.

I suggested that this was not the fiercely advocating March of Dimes I had come to expect, and that I was extremely concerned with the lack of public response.

Doug was also surprised that women were being told about high copayments when, to his knowledge, nobody should have been prescribed Makena yet. He said that expectant mothers already on 17P should be able to continue their existing course of treatment, and that only new patients would be getting Makena. He also said that no negotiations had taken place yet with insurers and other payers over the price that they would pay. He likened the $1,500 cost per dose of Makena to the list price of a car, and said that it was likely that none of the insurers or other payers would actually end paying that price.

I suggested that one course of action for the March of Dimes should be to take a number of test cases of mothers who had been given high copayments by their insurers and help them through the process to see if they would get assistance with the copayments. I also suggested that more forceful action may still be necessary.

Doug agreed that working with test cases was a good idea, and said that March of Dimes will be meeting next week with K-V to discuss the pricing issues and will see if they can resolve the issues in a collaborative fashion. He also indicated that, as I had suggested in the comments to my first post on this topic, if necessary March of Dimes might decide that they have no choice but to break their contract with K-V and return their donations in order to be able to take a more adversarial approach to resolving the situation.

I do believe that often collaborative problem solving provides better outcomes than confrontational problem solving, but that sometimes confrontation is the only way to break a logjam. I’m glad that the March of Dimes is showing a willingness to throw down with K-V if necessary.

Of course, this is good talk, but we haven’t seen action yet. Doug seemed very anxious to hear my opinions, and responded positively to my suggestions. (It sounded like he was taking notes while we talked, as well.) I told him that I was going to continue to sit on the sidelines for another week or two before deciding whether to start fundraising in earnest for this year’s March for Babies or give up on the organization, and he thanked me for my commitment and for taking a collaborative approach.

But that’s words. Let’s see some action.

I know that some would have wanted me to take a more confrontational approach. I did call the March of Dimes out for its ineffective and limp actions to date, and Doug largely agreed with me. I also think that Jen Gunter has some good questions for the March of Dimes. It’s probably a good thing that we’re working from opposite ends on this. By having some confrontation and some collaboration, we can work both inside and outside the box. Perhaps the March of Dimes, ACOG, AAP and SMFM need to do the same thing. Pick sides, and have some attack strongly from the outside, while others work fervently from the inside. Perhaps a coordinated inside/outside approach will help K-V to change their pricing and stand by their PR for the Patient Assistance Program.

For now, confronters please keep confronting. I plan to continue collaborating. If I don’t see movement, I will be calling Doug back. Let’s see if together we can get some movement going in the right direction, and then build momentum. Let’s bring the March of Dimes back onto firm advocacy grounds from the helpless, limp position that they have put themselves in through this contract with K-V.

Since they appeared to be open to opinions and advice, I’m going to give them the benefit of the doubt for the next week or so. But that’s it.

What do you think? Confront? Collaborate? Both? Will the March of Dimes do what it needs to do, or will it continue to take the money and run?

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6 Responses to March of Dimes knows it messed up, and is trying to earn our trust back

  1. Jennifer Campbell says:

    Thanks for your comments. Please make sure that Doug Staples knows that mothers currently taking 17P can not continue on it “as is.” As a mother that is 25 weeks, I have been on 17P, and was told 2 weeks ago I could not renew my prescription. My prescription for Makena was finally approved yesterday. A week ago, my insurer told me that their computer system showed a 30-day supply of Makena was$7,696, and that I would have a co-pay of $1,924. I found out just yesterday that I have an out-of-pocket maximum of $2k, so that’s all (!) I would be personally exposed to in costs. However, my insurance is still paying for this…and as we all know, the costs/premiums will eventually trickle down.

    As for the Patient Assistance Program, my feeling is that it will indeed help women (who qualify) to help cover their costs. However, please know that the insurance companies and Medicaid (our taxpayer dollars) will still be covering the vast majority of the costs. Plus it is just more red tape to go through to get the drug. Never in my life have I had to go through hoops to get a Rx filled. I had to call the actual pharmaceutical company, and have my doctor fax a prescription directly to them…wait for them to call my doctor’s office back to confirm…then wait for the company to call me, etc! I will say, that everyone I’ve spoken to at KV/Ther-Rx has been helpful and gone out of their way to try and answer questions and make sure I get my next shot/dosage on time. However, this is what they should be doing, and still doesn’t excuse the high price.

  2. Sharla says:

    I am upset that this new drug is so expensive. If we take all emotion out of it and simply look at the numbers, wouldn’t it just be cheaper to give the drug than to have to pay for all the hospital costs associated with premature babies? It must cost insurance companies tens of thousands if not hundreds of thousands per premature birth, and if this drug would stop or cut down on premature births just think of the money the insurance companies would save!
    I understand that it is new, and sometimes new things cost more, but that is just a ridiculous price! I am currently at 19 weeks but have had no previous miscarriages or premature births so I’m thankful that I don’t have to take this drug (this time around at least).
    It kind of seems like one would have to make the choice between their wallet and their baby, and that’s not fair. Of course I’d choose my baby if I could, but it would be really sad if someone’s baby died because the parents simply couldn’t afford this medication.

  3. Mark says:

    Jennifer,

    Thank you for sharing your story. I will make sure that Doug is aware of it, and I will see if they would like to use you as a test case for the Patient Assistance Program. I agree that it still won’t protect the insurers and other payers, but we can’t fix everything at once. Let’s make sure that the mothers — the ones least likely to be able to absorb the cost — are taken care of. Then we can work to fix the cost for the insurers and other payers (who are better able to advocate for themselves, anyway).

    It’s good that you were able to absorb the price increase, but wouldn’t it have been better to spend that money on the baby’s room and supplies?

    Sharla,

    The drug is “new” in name only. It has been used (off-label) from compounding pharmacies for a long time. The only difference is that now it’s FDA-approved as an orphan drug, so K-V has a monopoly on it for seven years. It doesn’t cost any more than when compounders sold it for $10-$20 per dose. In fact, K-V reportedly trumpeted to investors that Makena has a 97.5% profit margin!

    And babies have already died because their mothers couldn’t get the medication, but in those cases it was because their doctors wouldn’t prescribe a medication for off-label use. That’s why getting it FDA-approved is a good thing. It’s just the circumstances and price surrounding that fact that has us all up in arms.

    Glad to hear that all is still healthy with the baby. Did I see elsewhere that you found out that it’s a girl? Has Lou begun the pink purchasing?

  4. Sharla says:

    Believe it or not we’ve bought nothing yet! Pink will overwhelm us, I’m sure! Still trying to decide on a nursery theme but I don’t want something too princess-ey. Doc said both baby and me looked healthy and I go back end of April for next checkup.

  5. Constance says:

    Thank you for fighting this fight. I only came across your blog as I am researching places to give to support women and pregnancy and premature birth. I gave birth to my beautiful son at 34 weeks, luckily he was fine. I was diagnosed with an incompetent cervix at 19 weeks, though they are still unsure about IC vs. PTL. I felt like my doctors were shooting darts blindly. I will be watching this story carefully. In the meantime can you suggest other non-profits to get behind?

  6. Mark says:

    Hi Constance,
    If you read the posts that came after this, you’ll see that March of Dimes broke its contract with KV and Ther-Rx so that they could take an adversarial position against the pricing of Makena and support continued prescriptions of 17P through compounders to ensure that expectant moms can continue to have access to it without being put into financial jeopardy. I was very pleased to have played a part, however small, in encouraging them to take that step. Meanwhile, Makena is an approved therapy that is on formulary so that women whose doctors will not write an off-label prescription will still have the option, and in seven years we’ll have official generics on formulary.

    Since March of Dimes has made the commitment to fight the pricing of Makena and given up the revenue that they would have received from donations by Ther-Rx, I have resumed my support of the organization, and I’ll be walking on Sunday to raise money for the cause. I’ll be joined by my 12-year-old son, who was a 28-weeker that is here because of Decadron, artificial Surfactant, and other March of Dimes-supported therapies.

    Thanks for sharing your story. I’m glad that your son made it through OK.

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