Posts tagged legislative concerns

Another Way to Advocate for Patients

by Emily Muse, AAHPM Communities Manager

I am a planner. I create lists, diagrams, and spreadsheets for almost everything. I even use a planning rubric when packing for weekend trips. Obviously, I began my preparation for the 2011 AAHPM Washington DC “Capitol Hill Fly In” by researching my congressional representatives and senators. I wanted to learn as much as possible about the people I would be meeting and were “representing” me in D.C. A lot of this investigation was done just by entering my zip code in the AAHPM Legislative Action Center. (

At a glance I was able to discover all the committees that my senators and my congressional representative served on. How they had voted on specific legislation and issues and I read and reread all the proposed legislation that would affect AAHPM members. It was wonderful. After accessing their office addresses I plotted out where they were all located within the map of Capitol Hill.

I was ready, or so I thought.

What I was not prepared for was the knowledge, dedication and tenacity of our AAHPM members. It did not surprise me, it wowed me. Not only had our members prepared for this visit, they had been advocating and championing Hospice and Palliative in ways I had never thought about. One member encourages staff to contact elected officials regularly about HPM issues. Another invited his representative to visit his program and learn firsthand what Palliative Medicine provides for constituents. All of our members had brought with them anecdotes of patients achieving successful pain and symptom management, making decisions about their care that made sense for themselves and their families and utilizing allocated resources appropriately due to team based care and excellent communication among providers. And what was even more impressive, Senators, Representatives and Staffers all listened. They asked questions and posed some opposition, but they were open to learn more. I hope some of those members who participated in this year’s DC Fly In will write about their individual experiences. I think all of the participants were amazing, even one who commented that this was “just another way we advocate for our patients”.

Palliative Care in the Age of Healthcare Reform: The Impact on Your Practice (403)

Diane Meier’s talk this morning was less a presentation than a call for action to the palliative care field. Dr. Meier spent a year working on capital hill and has continued to advocate for palliative care on a local and national level.

She began with a review of the Affordable Care Act and the challenges faced in our country given the current unsustainable spending on healthcare. More and more people are looking to the value equation: Value=Quality/Cost. The United States struggles to increase value and has been unable to accurately measure and increase quality, costs have continued to rise. As we debate how to cut costs it is critical that palliative care not be left out of the discussion.

Currently, most of the talk around bending the cost curve has been related to changing payment structures including the formation of Accountable Care Organizations (ACOs). High quality, well integrated palliative care is a critical piece the health care continuum, and we should be advocating that it is included in any discussion of ACOs.

Unfortunately, there are very few voices from the palliative care community “at the table” in Washington and so our concerns are often not addressed. Only a tiny portion of NIH funding (0.01%) is devoted to research in the field of palliative care which only leads to further misunderstanding of our views and mission.

So how can we make a difference? How can we make sure the palliative care is included in health care reform efforts going forward? Dr. Meier outlined several steps that we can take as a profession and as individuals.

  • Language is important. We must be consistent in how we talk about what we do. Her suggestion: “Palliative care is about matching treatment to patient goals.” What do you think?
  • Submit your organizations data to CAPC’s registry so that quality is measured and improved.
  • email/call/write a letter to your congressperson. AAHPM has made it easy!
  • Mark time off in your calendar to meet with your congressional representatives to discuss and lobby for palliative care.

Our elected officials want to hear from us and they take our views very seriously. As an movement we need to start speaking up or health care reform is going to pass us by.

At the White House: ACA Implementation—An Opportunity to Advance Palliative Care

During my year as AAHPM President, I’ve had many opportunities to represent the Academy and have often been on Capitol Hill, looking to expand access to palliative care through the public policy process. On Dec. 17, the Obama administration held a meeting with community physicians at the White House to seek input about implementation of the Patient Protection and Affordable Care Act — the healthcare reform law. I was honored to be invited to attend and represent AAHPM members, as well as the other member organizations of the Hospice and Palliative Care Coalition (NHPCO, HPNA, CAPC, NPCRC and NASW).

This meeting—the first in a series—was hosted by Zeke Emanuel, MD, special adviser for health policy in the Office of Management and Budget (and brother of Obama’s former Chief of Staff Rahm) and the new CMS administrator, Don Berwick, MD, who provided a brief update on delivery system reform. The primary focus of the event, however, was to hold an open dialogue, so all participants were invited to come prepared with any questions or concerns they would like to raise. Much of the discussion focused on the launch of a new patient safety initiative and proposed rules for accountable care organizations (ACOs) participating in the Medicare program under the Affordable Care Act. I went on record stating the importance of palliative care in terms of improving quality of clinical care, improving family experience, and reducing cost. I urged inclusion of palliative care in the new ACO’s. (Read the Academy’s official comments to CMS regarding ACOs.)

There are many parts to the healthcare reform legislation, but many of the specifics are left to be defined through the rulemaking process. It will be important to see where the Academy can have the most impact by weighing in on these efforts. Last month, AAHPM joined with its Coalition partners in providing comments to the Institute of Medicine as it studies the Essential Health Benefits outlined in the Affordable Care Act. The Coalition urged officials to ensure that palliative care and hospice care are defined as essential components of all insurance plans offered under the government’s exchange, in order to deliver quality care for the nation’s sickest and most vulnerable patients. I’ll have a chance in January to speak to the IOM Committee working to define these benefits.

While I am pleased to be the voice of AAHPM’s membership, mine is not the only voice that officials want to hear. We’ve come to learn that they are looking to see not only which folks but how many folks are weighing in on these issues as a guide to how significant an issue may be. When there are opportunities for public comment that AAHPM has identified as an avenue to advance palliative care and hospice, we’ll include the details in e-News. I encourage you to follow up on these alerts. And don’t forget that you can always weigh in on legislative matters as well, directly contacting your representatives in Congress using AAHPM’s Legislative Action Center.

Healthcare Reform… Time to Act…

Healthcare Reform… TIME TO ACT!

WE (that means- you, your friends, anyone who cares about Hospic & Palliative Medicine and I) need to be involved in healthcare reform.

Doing nothing is not an option!

Questions to ponder as you peruse this Blog Entry…. (As always comments are HIGHLY encouraged…)

  1. Are you aware, many States are cutting hospice from the Medicaid budget? What’s happening in your State?
  2. Can you name the Academy’s four Advocacy Priorities? Should you care?
  3. How will the FDA/DEA/REMS affect your program’s ability to care for a dying patient?
  4. Are you ready to be an Academy Advocate?

Paul Tatum provides a fabulous summary of Diane Meier’s talk about WHY we must engage in the Healthcare reform conversation- lest be told what to do!!! Please see his blog posts for details on the “why” and “how” to get involved.

The legislative update presented by Drs. Tuch, Muir and Kollas summarized the status of healthcare reform today at the Federal and State level, the Academy’s focus for advocacy and FDA/DEA regulatory concerns specific to our field.

National Healthcare Reform Status:

  • Both the Senate and House passed Healthcare reform Bills
  • The White House is pushing for the House to pass the Senate Bill
  • Budget Reconciliation will begin with the above Bills if the House is unable to pass the Senate version
  • This will likely be a long process….

HPM and the Healthcare Reform Bills

  • Multiple provisions in each Bill and Future Bills:
    • Medicaid concurrent care provision
    • Medicare hospice concurrent care demo (Senate)
    • Hospice Payment Reform (MedPAC*, Senate)
    • National Pain Care Quality Act
    • Quality Reporting/Comparative effectiveness
    • Advance Care Planning resources (House)
    • PCTA** to be re-introduced by Senator Wyden
    • Productivity cuts affecting Medicare providers (hospice programs)

*MedPAC: Medicare Payment Advisory Commission

**PCTA: Palliative care training act

State Healthcare Concerns:

  • Many States have cut or are considering cutting Hospice Benefits from Medicaid
  • States are responsible from implementing national reform
  • Many State level initiatives to improve care-
    • POLST, Adv Dir, Sedation, IV Hydration & Nutrition
  • Continued lack of understanding of HPM

State Advocacy for HPM

Academy’s Four Focused Advocacy Areas

(Just think WARR… or come up with your own mnemonic ☺)

  • Workforce: increase the number of PC specialists
  • Access: improve patient’s ability to get PC when needed
  • Research: grants and funding focus (ex: PACA- academic achievement award)
  • Regulatory: DEA/FDA/REMS- ensure timely access to prescription medications

There are multiple sub-points under each advocacy initiative. For details on WARR :

Regulatory- DEA.FDA.REMS (see Cameron Muir’s post below)
  • DEA is concerned about diversion and abuse
  • FDA is concerned about public safety
  • REMS Risk Evaluation Mitigation Strategy­-
    • Issues addressed surrounding:
      • Access
      • Availability
      • Approval
      • Safety

For detailed information see:

Now that you have the bullet points- What is YOUR role?

Advocacy… You can do this…

  • Speak with one voice –
    • Know the Academy Focus: WARR
    • If you have special concerns- speak to Academy Advocacy Staff
      • Jackie Kosinski and Steve Smith
  • Your Representatives WANT to hear from you
    • TELL YOUR STORY! And relate the story to the Academy’s target one at a time!
    • Always bring the story back to the State level…
    • Use Resources created by the Academy
  • Get involved at the State Level!
    • This is a grassroots campaign- IF Obama did it, so can we!
    • Is your State addressing Adv Dir? POLST? Artificial nutrition and hydration? Hospice cuts?
    • Public Hearings are a great way to provide expert opinion
  • Communicate your concerns to the FDA-
    • AAHPM staff will be drafting a letter for members to send regarding regulatory concerns
  • Get involved with the Academy’s Advocacy Leaders

So… back to our questions with a few more from the audience at today’s talk:

  1. Are you aware, many States are cutting hospice from the Medicaid budget? What’s happening in your State?
  2. Can you name the Academy’s four Advocacy Priorities? Should you care?
  3. How will the FDA/DEA/REMS affect your program’s ability to care for a dying patient?
  4. Are you ready to be an Academy Advocate?
  5. Is the Academy coordinating efforts with other organizations? If so- who are they and on what?
  6. Does it really matter if the States give up Hospice Medicaid benefit?
  7. Will the DEA ever lighten up on e-prescribing?
  8. What are you doing in your State or in DC to advocate for HPM?

Let’s get the conversation started……

“How wonderful it is that nobody need wait a single moment to improve the world.”-

Anne Frank

Tanya Stewart MD FAAHPM