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American People

December 2011 Council Currents

Building Lasting Endurance

Extending Our Reach

MODDERN Cures Act Introduced

After years of hard work, the National Health Council (NHC) can proudly report that its first original piece of legislation, the Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act, has been introduced in Congress by Representative Leonard Lance (NJ-7). Introduced on November 18, the MODDERN Cures Act will also be known by its official bill number: HR 3497.

Over the course of the next few months, the NHC will be encouraging its members to advocate for the bill by asking their Congressional champions to sign onto the bill as a cosponsor. The goal is to have the bill passed by Congress and signed into law before this time next year. At this time, the NHC is still talking with potential Senate sponsors.

Representative Lance and the NHC issued a joint news release announcing the introduction of the MODDERN Cures Act. The release was picked up by more than 50 websites including Reuters, the Boston Globe, and the Washington Business Journal. The full news released can be accessed at by clicking here.  

To learn more about the MODDERN Cures Act, visit the National Health Council’s website.  


Creating an Essential Health Benefits Package

The National Health Council (NHC) continues to provide the united patient voice before the federal government in the development of an essential health benefits (EHB) package that all qualified health plans must provide, as required by the Affordable Care Act.

On October 7, the Institute of Medicine (IOM) released its long awaited
report on the determination of essential benefits, and the NHC issued a news release reiterating its recommendations to ensure that the EHB package meets the needs of people with chronic diseases and disabilities. The NHC stressed that the Department of Health and Human Services (HHS) must strike a balance between affordability and a robust level of service, and urged HHS to go one step further and include specific patient protections outlined in the NHC’s essential health benefits work. NHC President Myrl Weinberg was one of the patient representatives invited to present at an HHS-sponsored EHB listening session for stakeholders on October 20.


NHC staff is also engaged in conversations with staff from the Center for Consumer Information and Insurance Oversight and the office of the Assistant Secretary for Planning and Evaluation, which are the two HHS offices that are most involved in the development of the EHB package. These offices are expected to release draft EHB regulations before the end of the year. 


Engaging with the Patient-Centered Outcomes Research Institute

The NHC continues to work with staff and leaders from the Patient-Centered Outcomes Research Institute (PCORI) as it begins to define the nation’s comparative effectiveness agenda. In October, NHC staff met with PCORI’s Executive Director Joe Selby, MD, MPH, to share information and insight the NHC has gathered from member patient advocacy organizations.


One of PCORI’s more important actions to date is its Tier 1 Pilot Project Grants Program, which will help the institute establish the comparative effectiveness infrastructure. The NHC, working with strategic partners, submitted a letter of intent to apply for one of these inaugural grants. A copy of the letter of intent is posted on the NHC website.


Dr. Selby will be the guest speaker at the NHC’s Annual Meeting and Luncheon on December 13 in Washington, DC. NHC member organizations have until Wednesday, December 7, to register for the event.


Supporting Prescription Drug User Fee Act Reauthorization


On September 1, the Food and Drug Administration (FDA) released its agreement with industry for the reauthorization of the Prescription Drug User Fee Act (PDUFA). The agreement includes three priorities championed by the NHC: the creation of an objective, qualitative framework to determine benefits and risks of drugs in the evaluation process; increased resources for the use of biomarkers and patient reported outcomes in clinical trial design; and resources to improve the evaluation of drugs for rare diseases. The NHC issued a statement thanking FDA and industry for including these important provisions.


Following the release of the agreement, FDA hosted a public meeting where stakeholders were invited to present their views on the agreement. Marc Boutin, the NHC’s Executive Vice President and Chief Operating Officer, spoke on behalf of the united patient advocacy community, and the NHC submitted formal written comments. In addition, a joint advertisement orchestrated through the NHC and encouraging Congressional approval of PDUFA ran in newspapers on Capitol Hill that same week.


The agreement will next go to Congress, which must pass legislation to reauthorize PDUFA before its expiration on September 30, 2012.


NHC Honored by AdvaMedDX


The National Health Council was recently honored by AdvaMedDx in recognition of its work advocating for policies that will enhance the creation of new diagnostic tests to help patients with chronic conditions. NHC Vice Chair LaVarne Burton, President and CEO of the American Kidney Fund, accepted the award from AdvaMedDx Chair of the Board, Vince Forlenza, CEO of Becton Dickinson, a medical technology company (right). They are joined by Andy Fish, Executive Director, AdvaMedDx (left).


NEW: A Different Normal

The National Health Council and WebMD, the leading website for health information, have partnered again on a new initiative to deliver important messages and information to help people with chronic diseases and disabilities and their family caregivers. Officially launched in September, A Different Normal: Living with a Chronic Condition is a new blog focusing on people with chronic conditions. The web page is already averaging about 23,000 page views per month.


The blog features guest writers from NHC’s member organizations, as well as chronic disease experts from WebMD. Here are just a couple of excerpts from the powerful stories posted on behalf of NHC member organizations.

“…I’m happy with the life I have. Although having Marfan has prevented me from doing some things, I’ve achieved quite a bit in spite of it, and actually, because of it. My life has been enriched by the people I’ve come to know as a result of being in the “Marfamily,” and even by the negative experiences I’ve had, like surgeries.” -Maya Brown-Zimmerman, National Marfan Foundation


“I owe so much of my life to [my family] and am so thankful for all that they’ve done for me – especially for their understanding that, whether our lives are ‘normal’ or whether we’re living with a condition that creates a ‘different normal,’ each of us must take the life we are born with and make it full.” -Jack Kriz, National Foundation for Ectodermal Dysplasias.

“The human capacity for compassion and kindness is great and takes many forms…. Finding an organization like the National Psoriasis Foundation is a great place to start.  It can open your eyes and your heart to the power of giving and the powerful effects of giving thanks.” -
Krista Kellogg, National Psoriasis Foundation


The NHC would like to thank these authors and the following NHC member organizations participating in A Different Normal thus far.  

  • CaringBridge
  •  National Hospice and Palliative Care Organization
  • Huntington’s Disease Society of America
  • Mesothelioma Applied Research Foundation
  • National Foundation for Ectodermal Dysplasias
  • National Marfan Foundation
  • National Psoriasis Foundation
  • Parent Project Muscular Dystrophy
  • Prevent Blindness America
  • Society for Nuclear Medicine

NHC member patient advocacy organizations and non-profit organization members interested in participating in this initiative should contact Nancy Hughes, NHC assistant vice president of communications and marketing, at


NEW: 2011 Management Compensation Report

The latest edition of the annual Management Compensation Report containing the most detailed information collected about compensation practices for patient advocacy and human and youth service organizations will be released this month. The report is a cooperative effort of the NHC and the National Human Services Assembly and it includes salaries and benefits covering more than 80 positions. The 2011 Management Compensation Report tracks the broadest range of categories for these nonprofit organizations, including salaries and benefits, supplemental benefits, retirement and savings plans, and other broad-based benefits offered to employees.


All NHC patient advocacy organizations that participate in the project receive a free copy of the report; other NHC members can purchase the 2011 Management Compensation Report at a special reduced fee of $100. Reserve your copy now!


Extending Our Reach

NEW: Health Groups in Washington

The latest the edition of the Health Groups in Washington directory is hot off the press! This comprehensive directory is larger than ever and contains up-to-date contact information for approximately 900 nongovernmental health and health-related organizations in the Washington, DC, area. Since its first printing in 1975, Health Groups in Washington has been recognized as the single most useful resource for identifying and locating health groups in the nation’s capital.


Health Groups in Washington is available for the low price of $60; $40 for NHC members. To purchase your own copy, please complete the order form found on line and fax, e-mail, or mail it back to the NHC. The directory is also available as a mailing list or in PDF format; to order, contact the National Health Council at or 202-785-3910.


Connecting NHC Health Policy Efforts with Job Creation

In October, the President’s Council on Jobs and Competitiveness released a report entitled Taking Action, Building Confidence: Five Common-Sense Initiatives to Boost Jobs and Competitiveness. The report contains language supplied by the NHC that recommends that the FDA improve the regulatory system to encourage investment and job creation in the life sciences sector.

Specifically, the report calls on the FDA to create a qualitative benefit-risk framework for evaluating new drugs and a progressive approval pathway to enable the more timely development and availability of new therapies and technologies. NHC has championed both priorities as part of its policy work.

The language was crafted by NHC staff and two member organizations – the National Venture Capitalist Association and the Biotechnology Industry Organization – and was approved by the NHC’s member patient advocacy organizations. The section that includes this language begins on page 29 of the
report, which is available on the web


NHC Voice before Important Stakeholders

  • On September 15, NHC President Myrl Weinberg represented the NHC at the kick-off event for Care About Your Care, a Robert Wood Johnson Foundation initiative to raise awareness about what patients can do to identify and get better health care. The NHC is a Care About Your Care partner organization.
  • On September 28, NHC Executive Vice President and Chief Operating Officer Marc Boutin presented to the Partnership to Improve Patient Care on establishing a process to effectively engage patients with the Patient-Centered Outcomes Research Institute (PCORI). 
  • On October 18, NHC representatives met with Joe Selby, PCORI executive director, at the NHC offices.
  • On October 20, Weinberg presented on behalf of NHC and its members at an HHS essential health benefits listening session.
  • On October 24, Boutin spoke at the Food and Drug Administration public stakeholder meeting on the reauthorization of PDUFA.
  • On October 27, Weinberg served as the moderator at an Aspen Institute panel on Consumer Engagement and Accessibility of Health Information in Washington, DC.
  • On November 3, Boutin presented at the California Healthcare Institute on the MODDERN Cures Solution.
  • On November 4, Boutin presented at the American Academy of Family Physicians 2011 State Legislative Conference on creating an essential health benefits package.
  • On November 10, Boutin presented at the GlaxoSmithKline Northeast Advocacy Summit on the NHC’s research on developing an essential health benefits package that meets the needs of people with chronic conditions.



Sharing the NHC Message and Knowledge with Others 



Center for Information and Study on Clinical Research Participation (CISCRP)

Did you know that 74% of people say they have no ‘real’ knowledge of the clinical research process? And that 98% do not know where and how to identify and evaluate appropriate clinical studies for patients diagnosed with cancer and other chronic diseases? 

CISCRP is a nonprofit organization dedicated to educating and informing the public, patients, medical and research communities, the media, and policy makers about clinical research and the role each party plays in the process. CISCRP provides information  about how patients can become informed clinical research participants. The organization also strives to help people locate ongoing clinical trials by supporting the website, an online tool created for the public.


CISCRP also organizes and hosts the AWARE for All Program, A Clinical Research Day. AWARE for All is an educational program that is free and open to the public for the purpose of providing education to help people make informed decisions about clinical research participation. Click here to watch a video to learn how your organization can utilize pre-packaged tools aimed to educate the public and increase engagement in clinical trials.


In addition, CISCRP produces a newsletter called Medical Heroes, which strives to educate and help those interested in clinical research understand the process, and honors research participants as medical heroes.


Click here to get more information about CISCRP and read their latest newsletter.

The National Health Council is a proud supporter of the Center for Information and Study on Clinical Research Participation (CISCRP), and NHC President Myrl Weinberg is a member of the CISCRP Board of Advisors.


International Alliance of Patients’ Organizations (IAPO)

The International Alliance of Patients’ Organizations (IAPO) is a unique global alliance representing patients of all nationalities across all disease areas, and the NHC was instrumental in its creation and operations.

IAPO recently launched a toolkit, Working with Partners and Stakeholders, which focuses on fundraising, communications, advocacy, policy, planning, governance, and training. The toolkit provides guidance and best practice examples of how patient organizations can develop effective, long-term partnerships with various stakeholders. The toolkit also provides tips and information to help with some of the challenges that can occur when working with external stakeholders. 

Additionally, the toolkit provides materials to assist organizations in developing their infrastructure and capabilities, as well as guidance on core skills and activities. Areas covered include raising awareness, advocacy, strategic planning, fundraising, and effective communication.

The toolkit is broken out into the following sections:

  • Collaborating with stakeholders
  • Working with pharmaceutical companies
  • Key patients organization activities
  • “How to” guides
  • Other tools and resources

Each section of the kit provides documents that are available for download and links to further information.

The IAPO 5th Global Patients Congress will take place March 17-19, 2012, at the Renaissance London Heathrow Hotel in the United Kingdom. The IAPO Congress will examine how patient-centered health care is achieved around the world. Participants will share, collect, and promote evidence of progress, including best practices, tools, resources, and case studies to support the development of advocacy and communication initiatives, and outcome indicators to measure the impact of patient-centered health care.

Every IAPO member organization has a guaranteed place in the Congress. Non-members are also welcome to attend as invited guests. To learn more or to register for the event, click here.