March 2015 Council Currents


NHC Selects New CEO

The National Health Council (NHC) Board of Directors announced the selection of Marc Boutin as the next NHC chief executive officer. Previously serving as the executive vice president and chief operating officer of the NHC, Boutin replaced CEO Myrl Weinberg on March 1. Boutin is a regular spokesperson before the media, Congress, and policy makers on major issues of interest to the patient community. He is also a member of the International Alliance of Patients’ Organizations Governing Board, the Community Health Charities Board of Directors, the Patient-Centered Outcomes Research Institute Advisory Panel on Patient Engagement, and the North American Advisory Board to the Drug Information Association.


Standards of Excellence to Address Sunshine Act

The Centers for Medicare and Medicaid Services (CMS) has responded to a letter sent by the NHC, which urged the creation of an exclusion under the Open Payments Program, also known as the Sunshine Act, for voluntary health agencies (VHAs). The exclusion would exempt reporting for indirect payments to VHAs in cases when an applicable manufacturer grants full and independent discretion to VHAs in selecting recipients for funding.

The response letter from CMS stated that unrestricted corporate donations to VHAs are not subject to reporting requirements. In a February meeting, the Chief Executive Officers of the VHAs decided to establish as part of the Standards of Excellence Certification Program® a standard that indirect payments to VHAs, whereby VHAs maintain full discretion over how the money is used, do not need to be reported to the funder, as they are not subject to the Open Payments Program.

One of the unintended consequences of the Sunshine Act is VHAs that receive grants from manufacturers are being asked by the companies to report which doctors are receiving the funds, even though the VHA decision-making process for allocating the money is independent of the manufacturers. Also, the money is typically comingled with funds from other sources, such as individual donations. Each company has a different process for reporting. This means that if a VHA receives support from 20 different companies all requiring reports, the VHA may have to navigate 20 different reporting structures.

National Health Council’s 21st Century Cures Proposals

The House Energy and Commerce Committee has released its discussion draft for the 21st Century Cures initiative to advance the creation of new treatments and cures, and it addresses four issues that have been championed by the NHC. They are

  • Creating a new category of drugs called dormant therapies to encourage the development of promising treatments for people with unmet medical needs. Dormant therapies are the cornerstone of the NHC’s MODDERN Cures Act.
  • Promoting patient engagement throughout the drug development process to better incorporate patient preference. The draft places a huge emphasis on patient engagement. It includes a placeholder for language about communication between industry and patients and calls for a more rational system that does not subject industry to enforcement actions if they engage with patients.
  • Allowing for greater sharing of patient data with researchers. NHC patient-focused research has shown that people with chronic conditions want, within certain parameters, to share their medical information with researchers with the hope of finding better treatments and new cures. The draft creates a new paradigm that allows for greater sharing of patient information for research purposes.
  • Streamlining institutional review boards (IRBs) to assist in collaboration across academic institutions. The draft removes administrative burdens of multi-site clinical research by streamlining the IRB approval process, which will lead to more effective and efficient drug development.

On January 29, the Senate Health Education Labor and Pensions Committee released a white paper seeking public comments on these and other issues addressed in the House discussion draft. The NHC submitted comments on February 13 supporting provisions included in the white paper.


Using Patient Health Insurance Exchange Experiences to Develop Policy

With the help of Avalere Health and Lake Research Partners, the NHC conducted focus groups in Chicago, Los Angeles, and Atlanta with people living with chronic conditions who enrolled in an exchange health care plan. Many patients recounted their experiences with the exchanges as challenging and frustrating. The most consistent issue across all three focus groups was the lack of provider network transparency; many participants reported they assumed that health plans issued inside and outside of the exchange by the same company would have the same carrier network, which often was not the case.

The NHC, with the assistance of Lake Research Partners, also conducted a national online survey of people with chronic conditions who enrolled in the exchanges, and preliminary data document similar findings. The results from the focus groups and the online survey reaffirmed the need for the NHC’s Putting Patients First® initiative, a unique, web-based calculator and suite of resources that help people gain a better understanding their coverage options in the health insurance exchanges.

Other patient protections, such as ensuring plan designs do not impede access to care and the need for exchanges to make it easier for patients to understand and compare plans, were also of concern to those who participated in the research. Some states are looking at these issues and some have implemented reforms that go beyond what is required by the federal government.

The NHC and Avalere Health are examining the insurance market requirements on the state level and developing state-by-state progress reports that evaluate the health insurance exchanges against metrics related to the NHC’s five patient-focused principles – non-discrimination, plan transparency, state oversight, uniformity standards, and continuity of care.

The NHC will be releasing the research findings and initial state reports at a public briefing in March.

Upcoming NHC Presentations

  • March 9 – NHC Chief Executive Officer Marc Boutin will present during a University of Maryland Center for Excellence in Regulatory Science and Innovation conference on patient-focused drug development.
  • May 15 – Boutin will be the keynote speaker at the 10th Anniversary of the Pharmacy Quality Alliance.

NHC Speaks to Health Community Stakeholders

  • March 3 – Marc Boutin was the keynote speaker at the Blue Skies and Brickwork Summit on patient engagement and evidence generation.
  • March 2 – Boutin presented during the National Health Council’s Patient Engagement Dialogue.
  • February 24 – NHC Assistant Vice President of Government Affairs Eric Gascho discussed dormant therapies during a panel for the Everylife Foundation.
  • February 23 – Boutin presented during the American Medical Association’s National Advocacy Conference.
  • February 10 – Boutin presented on patient engagement during the Biotechnology Industry Organization’s (BIO) board meeting.
  • February 4 – Boutin presented on how advocates can influence policy as part of Sanofi’s Leading Up for Tomorrow program.
  • January 8 – Boutin presented on patient engagement during BIO’s Alliance Development Committee meeting.

NHC in the Media

  • February 11 – 5 Tips for Procrastinators Who Need to Buy Health Insurance – Kaiser Health News
  • February 5 – How to Beat This Month’s Obamacare Deadline – MarketWatch
  • February 2 – Last Chance to Double-Check Your 2015 Health Insurance Plan Before Feb. 15 – Auburn Reporter
  • January 31 – Patient-Focused Drug Development: To Understand Patients, You Must Engage Them – Life Science Leader
  • January 28 – House Energy & Commerce Committee Releases 21st Century Cures Act Discussion Draft; The Nearly 400-Page Bill Includes More Proposals Than You Can Shake a Stick At! – FDA Law Blog
  • January 22 – National Health Council Promotes Boutin to CEO – BioCentury (subscription required)
  • January 20 – Health Insurance Can Help You Afford Health Care Costs: Part 2 – Michigan State University Extension
  • January 20 – Give a Little or Lose a Lot: How the MODDERN Cures Act Could Be the Answer to Addressing Unmet Medical Needs – Shift Central Blog
  • January 15 – Advocacy Group’s Tool Shows Metal Plan Impact on Costs – Inside Health Insurance Exchanges
  • January 14 – ACA Enrollment Deadline Approaching – WJXT Jacksonville
  • January 7 – Californians Are the Savviest ACA Exchange Consumers – California Healthline
  • January 7 – Florida No. 3 for Savviest Health Exchange Customers – Orlando Business Journal
  • January 6 – 10 States Where Patients Scrutinize Insurance Exchange Programs the Most – Rehab Management
  • December 18 – Stronger Patient Protections Are Around the Corner – Huffington Post
  • December 18 – NHC Comments on Kentucky Exchange’s Effort to Contact 12-thousand Enrollees Eligible but Not Enrolled in CSR Plans – Inside Health Policy (subscription required)
  • December 16 – Making the 2016 Marketplace More Patient Focused – American Journal of Pharmacy Benefits
  • December 1 – ‘Tis the Season of Easy Opportunities for Your Health and Health Coverage – West Seattle Herald
  • December 1 – Health Sign-ups Will Be Much Clearer – Sacramento Bee
  • November 26 – New Congress: Bipartisan Opportunity to Spur Innovation – Life Science Leader
  • November 25 – Advocates Seek More Enforcement of Obamacare Drug Benefits – Politico Pro (subscription required)
  • November 24 – Tougher Transparency Rules Proposed for Health Exchange Plans – Modern Healthcare
  • November 24 – Advocates Pleased with Proposed Consumer Protections for Exchange Plans – Inside Health Policy (subscription required)
  • November 21 – Health Officials Propose Setting Fall Sign-Up Window Under Federal Health Law – Wall Street Journal

Launching IAPO Americas

The International Alliance of Patients’ Organizations (IAPO) has announced the upcoming launch of IAPO Americas, an online platform in Latin America designed to provide information on biological and biosimilar medicines. The platform will be available in English, Spanish, and Portuguese, and will provide a space for discussion and debate on issues surrounding patient engagement. For more information, please read the release on IAPO Americas.

NHC is a founding member of IAPO, and NHC Chief Executive Officer Marc Boutin serves on the Governing Board as treasurer.

AAHRPP Accredits Seven Organizations, Expands to Thailand

The Association of Human Research Protection Programs (AAHRPP) continued to expand its list of accredited organizations in 2014, including the first accredited organization in Thailand. The newly accredited organizations are:

  • Einstein Healthcare Network – Philadelphia, Pennsylvania
  • China Medical University Hospital – Taichung, Taiwan
  • Faculty of Medicine Siriraj Hospital, Mahidol University – Bangkok, Thailand
  • Marshfield Clinic – Marshfield, Wisconsin
  • National Marrow Donor Program – Minneapolis, Minnesota
  • Pearl IRB – Indianapolis, Indiana
  • St. John’s National Academy of Health Sciences – Bangalore, India

AAHRPP has accredited organizations in 46 states, Canada, China, India, Mexico, Republic of Korea, Saudi Arabia, Singapore, Taiwan, and Thailand. In 2014, AAHRPP also accredited the National Institutes of Health, the world’s premier research organization.

AAHRPP provides accreditation for organizations that conduct or review human research and can demonstrate that their protections exceed the safeguards required by the U.S. government. The NHC is a founding member of AAHRPP.


Food and Drug Law Institute Joins NHC

The NHC is pleased to announce that the Food and Drug Law Institute (FDLI) has joined the NHC as a Nonprofit Member with an Interest in Health. FDLI encourages the discussion of food and drug law issues through conferences and publications, and focuses on food, drugs, animal drugs, biologics, cosmetics, diagnostics, dietary supplements, medical devices, and tobacco. To learn more about FDLI, please visit their website at

Patient Advocacy Organizations Gather to Discuss Organizational Change, Health Policy

The NHC’s 28th Annual Voluntary Health Leadership Conference had record breaking attendance with more than 100 attendees, including members of the NHC Board of Directors, from 35 member organizations gathering to hear from speakers on topics such as patient-focused drug development, the 21st Century Cures initiative, creating a harmonious, effective relationship between senior staff and board volunteers, developing social platforms that benefit both patients and advocacy organizations, and lessons learned from the ALS Association’s Ice Bucket Challenge.

This year’s conference was the last public event for departing CEO Myrl Weinberg, who was honored during a luncheon for 18 years of service with the NHC.

Copies of the presenters’ slides, supplemental materials, and links to videos with some of the speakers are available on the National Health Council website.

Upcoming Affinity Group and Action Team Meetings

As part of its policy-making process and to encourage the professional development of the staff of member organizations, the NHC conducts several meetings throughout the year. Mark your calendars for these upcoming events:

  • Government Relations Affinity Group – first Thursday of the month (except August and December). Open to the senior government affairs staff of VHA member organizations.
  • 21st Century Cures/PDUFA-VI Action Team – third Wednesday of the month (except August and December). Open to senior government affairs staff of all NHC members.
  • Health Care Financing and Quality Action Team – third Wednesday of the month (except August and December). Open to senior government affairs staff of all NHC members
  • Affordable Care Act State Working Group – second Wednesday of the month (except August and December). Open to senior state advocacy operations and government affairs staff of all NHC members
  • Communications Affinity Group – Wednesday, March 11, from 2:30 to 3:30 p.m. The meeting is open to the communications staff of all NHC members and will be held in the NHC office in Washington, D.C.
  • Chief Development Officers Affinity Group – Tuesday, May 12, from 1:00 to 3:00 p.m. The meeting is open to the chief development staff of VHA member organizations. The meeting will be held in the NHC office in Washington, D.C. and via webinar.

Remember to also keep an eye out for the 2015 meeting schedule for the Grassroots Team and the affinity groups for chief financial officers, chief legal officers, and chief scientific/medical officers and research directors. All affinity group and action team meetings are posted on the NHC web calendar.

VHA Member Visibility Opportunities

To maximize the benefits of NHC membership for patient advocacy organization members, the NHC provides a number of avenues to showcase individual organizations. As a patient advocacy organization member, you can:

  • Submit a short piece for the NHC/WebMD blog A Different Normal, a website that reaches millions of people with chronic diseases and disabilities and their family caregivers. For more information about how to submit a post for this blog, e-mail Nancy Hughes, Vice President, Communications and Marketing, at
  • Update your member listing and links to your organization’s website. Each member has a link on the NHC Membership Directory and Giving Guide that provides important organizational information and web links viewable by the general public. Submit any updates to Jill Roberts, Manager, Communications and New Media, at
  • Post open positions in the NHC’s online Job Bank. To submit an opening for the Job Bank, please fill out the form on the NHC website.
  • List your Health Insurance and Exchange Resources on The NHC is collecting resources to help people learn about and choose health plans in the insurance marketplaces. Please e-mail web links for your materials to Jill Roberts at