The Time for Action:  Now More Than Ever

BY Sonya Negley


This week we have had one of the most controversial elections in U.S. history, and along with that election has come uncertainty.  Many of you have reached out to METAvivor this week because you are very concerned about the impact the election might have on your healthcare coverage, and how it might affect our legislative advocacy agenda now and in the coming year.

Our experts in Washington D.C. have assured us that the new president can’t just repeal the Affordable Healthcare Act (ACA) aka “Obamacare.” The new administration and Congress will work to develop a proposal that makes its way through the legislative process, which takes time, consideration, and negotiation. Popular provisions such as no prohibition for preexisting conditions, no annual and lifetime caps and no cancelling of a person’s healthcare coverage after they are sick have support on both sides of the aisle, and most of the provisions may be preserved in some way. Our experts have indicated that any proposed modification would have to offer some solution for people that are enrolled through the ACA health exchanges. So, from a practical standpoint, any legislation or regulation will have to offer alternatives. Our job, along with other patient advocates and organizations, is to inform our Congressional offices that these provisions are critical components for any proposed alternate plan.

Our representatives in D.C. have also shared three things that we must do to help ensure success on our legislative agenda:  good science/justification, strong advocacy and appropriate requests made at the right time in the process. This tends to hold true no matter which party controls the chambers of Congress or branches of government.

Moving forward, METAvivor will acknowledge that certain improvements can be made to the ACA, and we will focus our time and energy working to preserve the basic patient protections included in the law, including:

  • Prohibition on discrimination against preexisting conditions;
  • Limitations on annual and lifetime caps;
  • Insurance availability for young adults;
  • Prohibition on rescissions (cancelling the insurance of a person after they are sick).

There is good news for the Right To Try Legislation, and the bill’s sponsor, Senator Johnson (R-WI), was re-elected. We have two METAvivor Board Members meeting with his office this coming week, and will get a good assessment from his staff at that time.

There has been no indication yet as to how the appropriations package (which includes the funding increase for NIH) might (or might not) move forward at the end of the year. This is to be expected.

The bottom-line is that while everything is in a state of flux, we still need each of you to be energized. We will work with our firm in Washington D.C. to help connect you with your Congressional offices to educate them about metastatic cancer, the unique issues of a terminal illness and the priority needs of the community. It is very important we get the message correct so the issues that are priorities can be easily understood and communicated. METAvivor is here to help.

Early next year, we will work with our experts in Washington D.C. to provide a target-list for key states and districts after the new Congressional Committee assignments are announced. METAvivor will also have new, targeted messaging for you, and we will offer advocacy training specific to that message.

The Stage IV Stampede was a great start. With your help, we were able to get 38 Congressional members to sign on to the NCI letter, and we expect responses to that letter from NCI within the next 90 days.  We plan to continue our important work by hosting more Capital Hill days, and we have scheduled the next push to take place on April 4th & 5th, 2017.  Please mark your calendar to attend.

In closing, there is one thing that is certain in the midst of the uncertainty: METAvivor has a plan and is prepared to lead. Although the messaging may change and priorities and issues may be added, we must set a course to educate the 115th Congress about Stage IV metastatic cancer and the issues that are vital to the community. 

Now, more than ever we need the metastatic cancer community to come together with a unified voice.

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