Thursday, January 5, 2017

Notebook Page 21, December 2016

Snow and the coming holidays didn't keep the legislature away from finalizing the work of Michigan’s 98th legislature. Two major issues that ACS CAN was working on surrounded access to drugs; regulations for biosimilar drugs and oral chemotherapy fairness. Both issues at the start of December seemed to have some life but would they be able to make it across the finish line.

Earlier in the year House Bill 4812, the bill that provides the needed regulations for the substitution and dispensing of biosimilar drugs in Michigan took a major turn for the worse in the Senate Health Policy committee just before the summer recess. Groups in favor of the legislation, as it came out of the House, were found scrambling and trying to find ways to amend the legislation back to the version that had passed the House and included the critical language that required notification to physicians of substitution. The Fall brought very little activity around the legislation but rather conversations with Senators about a possible amendment on the Senate floor back to the House version and then passage during the end of the year.

Amendments were drafted and a key Senator was named as a champion for the amendment. Lame duck started; the time in the legislature when at segments all right and reason seem to escape people and deals begin to develop to get legislation moving and passed before the end of the session. This legislation was no different and rather than having productive discussions around the legislation the opposite happened. Discussions by groups with Senators about the amendment started a destructive movement against the legislation. Finally, the chairman of the Senate Health Policy committee said enough was enough and the legislation was dead for the year, leaving groups that had worked on the legislation at the doorstep with nowhere to go and lawmakers frustrated over the issue.

We have documented throughout the year that oral chemotherapy fairness was a key issue for ACS CAN. In May of this past year, the Michigan Senate passed Senate Bill 625 with all but one vote. The legislation had huge bipartisan support in the Senate, which usually sends a message to those working in or with the legislature that it should have the same support in the House. We learned this term that the House and Senate, although controlled by the same party, were the furthest philosophically from each other then they have been in years. Several large key issues made their way from the Senate with worked out compromises, only to have the House completely tear it up and write their own deals. 

Oral fairness was no different. The Senate worked hard with all of the stakeholders to ensure that the legislation that would move was a compromise. Groups like ACS CAN and the Leukemia and Lymphoma Society (LLS) took some concessions but so did groups like Blue Cross / Blue Shield (BC/BS) and the Michigan Association of Health Plans (MAHP) The legislation was finally in a place that it had never been, where the major health plan in Michigan (BC/BS) was not supportive but would not stand in the way of it moving through the legislature and patient groups were in support. Then the wall appeared in the House and MAHP worked with the House leadership to have the legislation sent to a committee that shuttered at the slight notion of anything that is a "mandate". Just the slightest notion of having a prescribed function in the legislation left the committee wanting to know more, slowing down the process considerably.

Summer came and went with ACS CAN volunteers spending time in local coffee shops, on their phones calling into their lawmaker's office, sending quick e-mails to their lawmakers asking for support, and even dusting off stationary and pen sets to send the hand written letters. Lawmakers knew what oral chemotherapy fairness was by the end of the Summer, leaving now just action from the committee. No hearings came and lawmakers came and went, off to finish their campaigns. So ACS CAN ran a campaign of our own.

Volunteers all around Michigan took a poster to bring around to their activities having people sign them to show their support for oral fairness. A mobile petition you could say; twenty posters were created. After Thanksgiving, we received eighteen posters back and started to put a plan in motion to make a final run at getting oral fairness passed. The first full week in December ACS CAN hosted a two-day drop in lobby day where we took volunteers to the House chamber doors and sent in notes for their lawmakers to come out and discuss oral fairness. This started on a Tuesday morning and by the afternoon of that Tuesday, the answers from lawmakers were becoming consistent, oral fairness will not move without drug price transparency. We knew that lawmakers were talking with each other about the issue, which raised its visibility and caught the attention of the Capitol news corp. We also brought those posters to the Capitol and displayed them for everyone to see. The posters and our activities were noticed by the media and were featured in two news stories and several interviews on radio and television.

Tuesday night our coalition created an amendment to counter the problem that the price transparency ask was attempting to address. Volunteers continued to come on Wednesday and continued to talk about the issue with their lawmakers and included that ACS CAN and others had an amendment to solve the problem that price transparency was addressing. Lawmakers took that information back to their colleagues, but still, the House leadership was convinced that the need for transparency was too great.  Thursday came and went and lead us into the last week of the session. The first day of the last week was Tuesday and leadership was still not willing to move, which left us dead in the water, having to wait until next term to finally get the fairness patients deserve. 

Throughout that second to last week of the 98th session, we had over twenty volunteers make the drive to Lansing to discuss oral fairness with just a couple weeks notice. We had over 250 calls go into the Speaker of the House's office asking for action. We had amendments to solve problems, we had over 2000 signatures from people all around Michigan, several hundred emails were sent from volunteers, but MAHP won the day. MAHP did find out though that the patient groups are a passionate force and will win this battle one day.

As we move forward in 2017, we just want to say thank you for all of your efforts in 2016. We won't let those efforts go to waste and use them to build on a great 2017. As always if you have any questions please contact Andrew ( and Matt ( and Happy New Year!

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