September 2014 Council Currents



NHC/Patient Organizations Seek Exemption from Sunshine Act Reporting

The Physician Payment Sunshine Act may have unintended negative consequences for patient organizations and their research programs, and the National Health Council (NHC) rallied the patient advocacy community to highlight and mitigate the impact. 

The Sunshine Act creates new requirements for pharmaceutical companies to disclose payments made to physicians. By extension, it also may force patient organizations to identify which physicians receive research grants or participate in continuing medical education programs (CME) if the organization’s programs receive support from pharmaceutical companies. The problem is that patient organizations typically pool support dollars from various sources, making it nearly impossible to assign specific sponsorship dollars to specific physicians. To set up such a reporting system would result in a significant administrative burden or the potential loss of important funding streams. 

The Centers for Medicare and Medicaid Services (CMS) recently set rules that exempt reporting of indirect funding to certified organizations if the industry sponsor does not direct its support to particular physicians and is not aware of the identity of the ultimate recipients. They have not yet applied this rationale to patient advocacy organizations and their programs, such as research, that receive industry funding.

The NHC will submit a letter to CMS Administrator Marilyn Tavenner next week requesting that research support and other sponsorships to patient organizations, which do not allow industry sponsors to direct funding to specific physicians or otherwise know who the physician recipients are, be treated in a similar fashion as continuing medical education organizations and be exempted from the reporting requirements of the Sunshine Act. To date, 58 organizations have signed on to the letter. 



MODDERN Cures Act Highlighted at Congressional 21st Century Cures Initiative Hearing

There are only a handful of treatments for the thousands of known diseases that affect the 133 million Americans with chronic conditions. To address the need to develop new treatments, the House Energy and Commerce Committee announced the launch of the 21st Century Cures initiative. Spearheaded by Chairman Fred Upton (R-MI) and committee member Diana DeGette (D-CO), 21st Century Cures aims to address barriers to the development of new and meaningful treatments and cures.  

NHC Executive Vice President and COO Marc Boutin testified at a 21st Century Cures hearingabout how the NHC-crafted legislation, the MODDERN Cures Act, would address barriers created by the current patent system and promote needed medical innovation for new treatments and cures. 

As of September 3, there are 73 cosponsors of the MODDERN Cures Acts in the House, and two Senators - a Democrat and a Republican - are working to finalize language to introduce a Senate companion bill.

The NHC would like to better understand how its members are engaging with the Committee on the 21st Century Cures initiative. If your organization has submitted comments to any of the white papers related to the initiative or otherwise interacted with the Committee, please share this information with NHC Assistant Vice President of Government Affairs Eric Gascho




NHC Urges HHS to Make Enrollment Transparent

When choosing a health insurance plan on, it is essential that patients have a clear understanding of their options and all changes that could affect their health coverage. People with chronic diseases and disabilities are at a particularly high risk of experiencing adverse outcomes if the wrong coverage is purchased. 

This is why, when the Department of Health and Human Services (HHS) released a proposed rule on redetermining the 2015 eligibility of participants currently in the health insurance exchanges, the NHC submitted comments urging HHS to ensure that people who sign up for coverage through the exchanges receive information about their insurance options in a clear, concise, and transparent manner. 

“We applaud HHS for working to improve patient protections for those who are served through the exchange market,” the letter states. “However, we believe that it is important to increase protections for vulnerable patient populations, particularly those living with chronic diseases and disabilities.”

The NHC comment letter presented two specific recommendations and the reasoning behind them:

  • For individuals subject to enrollment in a new plan or product in 2015 due to their 2014 plan or product being unavailable, assignment to a plan with similar premium and metal level should take priority over assignment to a plan under the same carrier.
  • The federal government should streamline the redetermination and notification processes for individuals and families with limited income who are eligible for assistance with premiums and/or cost sharing in the exchange.

The NHC continues to update the health insurance resources available on, which provides patient-friendly information about health insurance and the exchanges to help people educate themselves on their health coverage options. 



Upcoming NHC Presentations

If you are attending any of the following events, we hope you will participate in the sessions listed below to learn about the NHC’s initiatives and positions on national issues affecting the lives of people with chronic diseases and disabilities and their family caregivers. 

  • September 23 – NHC Executive Vice President and COO Marc Boutin will present during the FasterCures Benefit-Risk Bootcamp.
  • September 30 – NHC Assistant Vice President of Government Affairs Eric Gascho will be a panelist during the World Congress Summit on Patient Centricity and Advocacy.
  • October 21 – NHC CEO Myrl Weinberg will present on the NHC Ethics and Accountability Initiative during the March of Dimes Senior Management Council.
  • October 29 – Boutin will present during the PhRMA State Advocacy National Leadership Meeting.
  • November 4 – Boutin will present during the International Federation of Pharmaceutical Manufacturers and Associations’ global health conference. 



NHC Speaks to Health Community Stakeholders

  • August 12 - NHC Assistant Vice President of Government Affairs Eric Gascho presented during the Reimbursement and Access 2014 master class hosted by CBI.
  • July 21 – Eric Gascho presented during the American Heart Association’s corporate forum policy workshop. 
  • July 16 – NHC Executive Vice President and COO Marc Boutin was a panelist during the Brookings Institute workshop on Food and Drug Administration patient reported outcomes.
  • July 1 – Boutin presented on exploring the promise of patient medication information during a conference with the Brookings Institute. 
  • June 26 – Boutin presented during a BIO 2014 Convention session on the future of global innovation. 
  • June 25 – Boutin participated in two panels during the BIO 2014 Convention: “Will Innovation Have a Place in the Evolving US Healthcare Market” and “Patient-Focused Drug Development: Is the Promise Materializing?”
  • June 18 – Gascho presented at the 2014 Drug Information Association Annual Meeting on the patient voice in decision making. 
  • June 17 – Boutin participated on a Health Technology Assessment International panel titled “Global Patient-Centered Research Agenda: Lessons Learned from Establishing PCORI.”
  • June 16 – Boutin presented on patient-centered care and participated on a panel about executing a global patient-centered research agenda at the Health Technology Assessment International 11th Annual Meeting.
  • June 15 – Boutin presented during AcedemyHealth’s International Trends in Comparative Effectiveness Research and Health Technology Assessment Paper Review Meeting. 
  • June 12 – Gascho presented on the NHC’s website at the 3rd Annual Patient Advocacy Across the Life Sciences Conference.
  • June 11 – Boutin testified during an Energy & Commerce Health Subcommittee hearing about how incentives can be used to accelerate the development of new drugs and devices for people with unmet medical needs.
  • June 8 – Boutin chaired the Innovations in Engaging Patients and Caregivers in the Research Process panel at the AcademyHealth annual research meeting. 



NHC in the Media

  • August 11 – NHC CEO Myrl Weinberg was quoted in an article about the ICD-10 delay and how it could accelerate the development of and access to new diagnostic tests –Government Health IT

  • July 25 – NHC Executive Vice President and COO Marc Boutin discussed the need for more health insurance tools that educate people about their coverage options – Stateline

  • July 8 – Boutin stressed the importance of getting people the medication information that they need (Subscription required) – Inside Health Policy

  • July 7 – Boutin talked about the 21st Century Cures Initiative and the importance of patient engagement (Subscription required) – Inside Health Policy 
  • June 23 – NHC CEO Myrl Weinberg discussed how the Protecting Access to Medicare Act of 2014 was a step toward promoting the development and use of advanced diagnostics –American Journal of Pharmacy Benefits
  • June 13 – Boutin stated concerns that CMS did not address the cost of drugs in a recent policy regarding access to non-formulary drugs (Subscription required) – Inside Health Policy 
  • June 12 – Boutin urged Congress to update current patent exclusivity to spur drug research and development (Subscription required) – Inside Health Policy
  • June 11 – Boutin expressed concern about a proposal to create a catastrophic health insurance plan (Subscription required) – Inside Health Policy



IAPO Awarded Special UN Consultative Status


The International Alliance of Patients’ Organizations (IAPO) was granted special consultative status with the United Nations Economic and Social Council, which will help IAPO with its work to represent the patient perspective around the world. This new level of involvement will allow IAPO to continue that representation by allowing the organization to attend meetings and submit formal statements and presentations to the UN.


IAPO also announced the creation of the International Network for Understanding Pain (INUP). The network held its first meeting at the 6th Global Patients Congress earlier this year, and 14 representatives have met to discuss how to build awareness for people experiencing pain. 


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




New Accreditation Process Announced by AAHRPP

The Association for the Accreditation of Human Research Protection Programs (AAHRPP) recently streamlined its accreditation process to improve accessibility and transparency for organizations seeking certification. Changes to the process include the ability to submit paperwork digitally instead of by hard copy, clarified instructions, and new informational tools. For more information on the updated process, please read AAHRPP’s summer newsletter.

Three new organizations have received AAHRPP accreditation. The newly accredited organizations are:

  • New York State Department of Health in Albany, NY
  • Sahyadri Hospital, Ltd. in Pune, India
  • Tata Memorial Center in Mumbai, India

AAHRPP has accredited organizations in 46 states, Canada, China, India, Mexico, the Republic of Korea, Saudi Arabia, Singapore, and Taiwan. The NHC is a founding member of AAHRPP.




National Health Council CEO Departing in 2015

NHC Chief Executive Officer Myrl Weinberg has announced she is leaving her position at the end of February 2015. Under Weinberg’s leadership, the NHC has become an effective, united, and powerful voice for the interests of people with chronic diseases and disabilities and their family caregivers. In her announcement, Weinberg said, “I am confident that the National Health Council will continue on its current, upward trajectory.”

Since becoming CEO, Weinberg has helped the NHC create a framework for building consensus among member patient advocacy organizations which empowers them to speak with a united voice on private and public policy initiatives resulting in legislation and regulations on a vast array of issues, including health care reform, comparative effectiveness research, and patient-focused drug development.  

The Board of Directors has a defined process for selecting Weinberg’s successor, and a Transition and Search Committee has been chosen to manage the search for a new CEO. 



A Different Normal - Enhancements to the NHC/WebMD Blog

The NHC has been a proud partner with WebMD, the largest web-based source of patient information, in presenting A Different Normal. This blog has provided a link between member patient organizations and the millions of visitors to the WebMD website.

Last month, WebMD launched a new design for the blog that includes better search optimization for people seeking information about living with chronic conditions, better readability on mobile devices, and better promotion of the site across the WebMD platform under a new name Second Opinion: Chronic Conditions – When you’re living a different normal

The NHC continues to look for patients and member organization staff interested in submitting short articles for the blog. Some organizations have asked their annual patient volunteer award winners to write about their experiences living with a chronic disease or disability or serving as a caretaker for someone with a chronic condition. Other organizations utilize the blog as an opportunity to write about new patient education tools or service programs with links back to their website.

If your organization is interested in learning more about the blog and how to participate, contact Nancy Hughes, NHC Vice President, Communications and Marketing, at



Washington Representatives Retreat - Save the Date!

The annual Washington Representatives Retreat will be held in Annapolis, Maryland, onDecember 4 and 5. The two-day event is an opportunity for government relations staff from NHC member voluntary health agencies to learn about best practices in government relations, the topics on which the NHC is focusing, and to prioritize policy issues for 2015. There is no cost for NHC members to attend, and more information about the meeting will be sent to members this month. 



Mark Your Calendars for the 2014 Annual Meeting

The 94th Annual Membership Meeting and Luncheon will take place from noon to 2:00 p.m. on Tuesday, December 9, in Washington, DC. The Annual Meeting is a premier opportunity to network with staff from organizations across all membership categories.

An invitation to speak has been extended to Health and Human Services Secretary Sylvia Burwell. More information, including the location of the meeting, will be shared at a later date.



Sign Up for NHC's 2015 Voluntary Health Leadership Conference

The 28th Annual Voluntary Health Leadership Conference will be held at the Ponte Vedra Inn & Club in Ponte Vedra, Florida, February 11-13, 2015Registration for the conference is now open for member voluntary health agencies. In order for an organization to participate, both the CEO and a volunteer leader are required to attend.

The hotel rooms at the Ponte Vedra Inn & Club are only being held for the NHC until December 31. To make room reservations, please call 800-234-7842 and mention the NHC’s Voluntary Health Leadership Conference.

Questions about the conference should be directed to NHC Vice President of Organizational Affairs and Meetings Donna O’Leary at

As an example of the quality of presenters and discussion topics selected each year for the event, view the line-up of speakers, video interviews, and slide presentations from the 2014 conference.




Coming Soon: New National Health Council Website

Work started earlier this year to redesign and restructure to improve usability and help visitors to the website easily find information about the NHC, its policy initiatives, members, and member tools. The new website is scheduled to launch later this fall. 



Updated: Management Compensation Report for VHAs

To help member voluntary health agencies (VHAs) better hone their recruiting and retention efforts, the NHC and the National Human Services Assembly annually conduct a benchmarking survey of compensation practices across a spectrum of more than 80 mid-level and executive positions. The survey report also helps when responding to a question on the IRS Form 990 that asks whether an organization uses comparability data for determining the compensation of staff. 

The Management Compensation Report will be available for purchase in October, and ordering information will be posted on the NHC website on the publications page. NHC VHA members that filled out the benchmarking survey will receive a free copy of the final report. If you have any questions, or would like to receive information about participating in the survey next year, please contact Kelly Garrity, Director, Membership Affairs and Development,



Upcoming Affinity Group and Issue Team Meetings

As part of its policymaking 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.
  • Appropriations Issue Team – first Thursday of the month (except August and December). Open to senior government affairs staff of all NHC members.
  • FDA Issue Team – third Thursday of the month (except August and December). Open to senior government affairs staff of all NHC members.
  • Health Care Reform/CER Issue Team – third Thursday of the month (except August and December). Open to senior government affairs staff of all NHC members.
  • Communications Affinity Group – The next meeting will be held on September 10. Reporter Sarah Kliff from Vox Media will talk about how the patient advocacy community can work with Vox, an explanatory, web-based news service. There will also be a discussion about the 2015 exchange enrollment cycle. Open to communications staff of all NHC members. 
  • Chief Development Officers Affinity Group – The next meeting will be held on October 7. Open to senior development staff of VHA member organizations. 
  • Chief Legal Officers and Chief Scientific/Medial Officers and Research Directors Affinity Groups– The next meeting will be held on October 9 and will be a joint meeting of the two affinity groups. More information will be announced at a later date. Open to senior legal and medical staff and CEOs of VHA member organizations.
  • Grassroots Team – The next meeting will be held on October 15. Open to government relations and advocacy staff of VHA member organizations. 

Remember to also keep an eye out for information about the fall meeting of the Chief Financial Officers Affinity Group. All affinity group and issue 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 off the NHC Membership Directory webpage to an individual page providing important 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 e-mail Jill Roberts at
  • List your Health Insurance and Exchange Resources on The NHC is posting member 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