Last night I posted that I was contacted by, and had a productive discussion with, Doug Staples, SVP of Marketing for the March of Dimes. Today, I let him know that a comment under that post showed that although he had indicated that expectant mothers who were already on compounded 17P would be allowed to continue to do so, one mother had already posted that she had been informed that she would have to switch to Makena, and that she had been told that her monthly copayment would be near $2,000. I suggested that she might make a good test case for the patient assistance program.
Doug thanked me, said that he’d have someone look into the case, and told me to look out for a new letter to be posted to the website later today. Doug later forwarded the letter to me. I haven’t seen it on the March of Dimes site yet, so I’ll post it here for you to read:
March 23, 2011
Greg Divis, President
One Corporate Woods
Bridgeton, MO 63044
Dear Mr. Divis:
Thank you for your letter of March 17th. I am pleased to learn that you are ‘listening carefully to stakeholder concerns about list price, patient access, and cost to payers’. Thank you for considering additional steps tp ensure that Makena is available to all eligible women, and for convening stakeholders from the March of Dimes, the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, and the Society for Maternal Fetal Medicine next week.
In advance of that meeting, I want to go on record that March of Dimes expects Ther-Rx to come to the table with substantive commitments including:
1) A significant reduction in the list price of Makena.
2) Adjustments to the patient assistance program to ensure adequate coverage of all patients, insured, uninsured and underinsured.
3) A method for reporting on a regular basis to stakeholders on the patient assistance program to ensure that it is meeting needs in a timely and adequate way.
4) A justification or rationale for your pricing based on your investment in the product, savings to the health care system, or other appropriate methodology, which you are prepared to make public.
Without these elements, I do not believe that Makena can succeed in the current marketplace environment, and as a result, at-risk women will be denied access to a safe and effective treatment to reduce preterm delivery. Therefore if you are unable to make a clear commitment to significantly address the above issues at the meeting, the March of Dimes will need to pursue alternative strategies for ensuring that this proven intervention to prevent preterm birth is made available to all medically eligible pregnant women, and we will step away from our longstanding and productive corporate relationship with Ther-Rx. Thank you for your consideration of this critical matter.
Jennifer L. Howse, PhD
I think that this letter that should have been sent two weeks ago, when the pricing for Makena was first announced, but it’s still a move in the right direction. It’s much stronger than the limp first letter to Ther-Rx, it lists specific changes and information that it is looking for, and it includes the threat of stronger action.
Is it enough? Not in itself, no. But it’s a good move in the right direction.
Words are good, but they’re just words. Everything starts with words, so I’m glad to see the letter, but the next step is following with concrete action. There has to be significant movement.
While some may be looking for the home run on the first swing, I view this as more of an iterative process. Unfortunately, we’re starting far from an optimal situation, with a lot of ground to make up. Will we eventually get to a point where Makena Is not only affordable for all expectant mothers, but for the insurers and other payers? Maybe. Will that be accomplished this month? No way. Will it be this year? Possibly.
This will be a long slog through the mud, I have a feeling. But by continuing to make strides in the right direction and never letting up, we keep moving toward our goal. If it takes until the drug loses its orphan status and becomes available as a generic, that will be a failure. It will cost far too much and put far too much money in the pockets of the deceitful and greedy well before then (it will hit that point in mere weeks, to be honest). We were sold out in this process, but the game is not over. As long as we persist, there is hope.
What can you do? Contact your local March of Dimes office. Let them know that you are upset about the price of Makena. Tell them that your continued support of the organization hinges on their ability to fix the pricing debacle. Tell them that you’ll be watching. And follow up. If progress slows down, let them know that you’re not happy about it. But also let them know that you’re willing to help if there’s something that you can do. March of Dimes is an advocacy organization, and it does rely on us to provide support. If they set up a day for action on Makena, be sure to participate. While I expect a lot of the heavy lifting will have to be done by the organization itself, we also can’t turn our back on them if they’re making an effort and need grassroots support. And if the grassroots support is putting enough pressure on them, they’ll listen.
Also, if there’s anyone out there that has any pull with the American College of Obstetricians and Gynecologists, the American Academy of Pediatrics, or the Society for Maternal Fetal Medicine, talk to them, as well. The more organizations that we have putting pressure on K-V and Ther-Rx, the better.
Now, does all of this mean that I’m starting up my March for Babies campaign and that I’m back in the fold? Not just yet. Words are important, but that’s all we have so far. I will wait to see what kind of response comes from K-V/Ther-Rx, and what comes from the meeting next week. If Ther-Rx offers a “significant reduction” of Makena’s price from $1,500 to $750 per dose, that’s still a $3,750%-7,500% price increase. That’s relatively closer to realistic, but still absolutely far away. If the definition of “adequate coverage” for the patient assistance program doesn’t cover enough, there’s still work to be done. As long as the March of Dimes shows continued diligence in righting this wrong, I will work to help them achieve the goal. But the money won’t follow if there aren’t solid results. My decision on participation will be made by April 3, as that is 6 weeks before my walk. I’ll decide at that time whether I’ve regained sufficient trust to continue financial support or if I’ll take my dollars elsewhere while I continue to spend time working to get March of Dimes in a position to be successful in addressing the Makena situation.
I’ve got more thoughts on the issues behind this whole situation, and how things may have gone wrong, but I’ll save that for another post. In the meantime, what do you think about this letter to Ther-Rx? Is it a good start? Are you looking for a home run right from the start? Do you have any other concrete suggestions on how March of Dimes can address the Makena situation? Comments are open below. Please share your thoughts.