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American People

March 2012 Council Currents

Building Lasting Endurance

Extending Our Reach

The Case for the MODDERN Cures Act 

The National Health Council has ramped up its efforts to increase support of the MODDERN Cures Act. Seeking cosponsors of the legislation, staff from the NHC and its member organizations have held numerous meetings with members of Congress and their staff in 2012. 

The MODDERN Cures Act advances personalized medicine by getting the right medicine to the right people. The bill encourages the development of better diagnostic tools and co-development of diagnostics and drugs to predict the safe, effective, and efficient use of medicines. The MODDERN Cures Act also creates a new class of drugs called “dormant therapies” – medicines that address conditions with limited or no treatment options.

NHC member patient advocacy organizations have started to conduct their advocacy days on Capitol Hill where patients, caregivers, and other advocates meet with their elected officials. Many of the organizations have chosen to include the MODDERN Cures Act as one of their legislative “asks.” These meetings have been an incredibly successful way of using the patient voice to advocate for the legislation.

Additionally, the NHC was joined by member and non-member organizations in creating a letter of endorsement for the MODDERN Cures Act that will go to Representative Leonard Lance of New Jersey, who introduced the legislation, and cosponsor Representative Jay Inslee of Washington State. So far, the letter has been signed by the NHC and 45 individual organizations. We are continuing to encourage members and non-members to sign the letter.

In mid-February, Representative Lance hosted a news conference in New Jersey for local patient advocates to show their support for the MODDERN Cures Act. Patient advocates from the ALS Association, National Osteoporosis Foundation, Alzheimer’s Association, Mesothelioma Applied Research Foundation, and Easter Seals were in attendance, and Eric Gascho, the NHC Director of Government Affairs, spoke at the briefing. The event was covered by New Jersey media, including Central, the Asbury Park Press, and

On February 28, the NHC hosted a briefing on Capitol Hill to educate Congressional staff, NHC members, and other stakeholders regarding the concept of the MODDERN Cures Act. The panel of presenters included Chris Hempel, who has started her own biotech company to conduct a clinical trial for a rare disease that her twin daughters have; Rhonda Voskuhl, a UCLA researcher who is working on a promising but unpatentable drug to treat multiple sclerosis; Ben Roin, an expert on the patent law’s effect on medical innovation; Richard Heimler, a cancer survivor who has benefited from a companion diagnostic that identified the right treatment for him; and Andy Fish, an expert on the diagnostic industry. The handouts and slides from the briefing are posted on the web at


If your organization would be interested in learning more about the MODDERN Cures Act, advocating for it on the Hill, or being added to the list of supporters, contact Eric Gascho at The NHC can work with your organization to develop materials for your advocates and can provide a speaker to your events.

Creating an Essential Health Benefits Package

On January 20, the NHC hosted a Congressional briefing on essential health benefits (EHB) attended by more than 120 Congressional staff and representatives from various stakeholder organizations. Expert speakers offered background information on the issue, discussed the NHC’s work, and offered a pathway for moving forward toward creating an EHB package to meet the needs of patients. Documents that were distributed at the briefing can be found 

In December 2011, the Centers for Medicare and Medicaid Services released a guidance bulletin that described that states determine the essential benefits that insurance plans in their state must cover by choosing a sample plan from their state as a benchmark. The bulletin requires that benchmarks must meet certain criteria and outlines a process to choose a default benchmark if states do not act. The NHC responded to the bulletin by commenting that it would not meet the needs of patients with chronic conditions unless further guidance is released to address federal oversight and mechanisms to protect patients from discrimination. Guidance to address these issues is yet to come, and the NHC continues to communicate with CMS staff as they prepare these guidance documents.


Engaging with the Patient-Centered Outcomes Research Institute

On January 23, the Patient-Centered Outcomes Research Institute (PCORI) released it Draft National Priorities for Research and Research Agenda: Version 1. The document outlines 5 key areas where PCORI plans to focus on information that patients and caregivers need in order to make important health care decisions. 


PCORI’s proposed national priorities are

  • Assessment of prevention, diagnosis, and treatment options;
  • Improving health care systems;
  • Communication and dissemination;
  • Addressing disparities; and
  • Accelerating patient-centered and methodological research.


This draft does not include prioritizing any particular condition or disease for research, although this may be added in the future with further refinement. The NHC plans to submit comments on the research agenda, which are due in March.


Marc Boutin, NHC’s Executive Vice President and Chief Operating Officer, participated in a roundtable of experts at PCORI’s February 27 listening session on the Institute’s priorities and draft research agenda. To view the video of the event, go to and submit your name and e-mail address. Move the toggle switch below the video screen to approximately the 50-minute mark to view the panel discussion with Boutin and other patient representatives.



Supporting Prescription Drug User Fee Act Reauthorization

After months of negotiations, the Food and Drug Administration (FDA) finalized its Prescription Drug User Fee Act (PDUFA) agreement and submitted it to Congress. The legislation must be passed to reauthorize PDUFA before its expiration on September 30, 2012. In January, similar agreements were also submitted to Congress for new generic drug and biosimilar user fee programs. The Medical Device User Fee Act agreement has also been tentatively reached by the FDA and industry stakeholders; however it has not yet been sent to Congress.


The House Energy and Commerce Committee has held numerous hearings on each of these various user fee agreements, which have included a variety of expert testimony. Among them, FDA Commissioner Margaret Hamburg, who testified on PDUFA at the hearing on


February 1, and Jeff Shuren, Director for the FDA's Center for Devices and Radiological Health (CDRH), who testified on PDUFA on February 15During the negotiations leading up to the final PDUFA agreement, the NHC advocated for and successfully secured the inclusion of provisions that would benefit the patient community. For more information about the NHC’s work on PDUFA visit the NHC website.



Reaching New Audiences Through WebMD

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. A Different Normal: Living with a Chronic Condition is a blog focusing on people with chronic conditions.

The blog features guest writers from NHC’s member organizations and chronic disease experts from WebMD. It is a way for organizations to provide meaningful information and patients to ask questions, share their powerful stories, and provide personal knowledge of the subject.


“…It was never a death sentence, but at 23 years old, it was hard to come to terms with my lupus diagnoses. In a 90-degree waiting room filled with people with an average age of 70, my dad said, “We’ll get through it.” Tears had already surfaced. “Karin, you’re a fighter. We can take this on.”That day my dad’s comforting words held me together, and his confidence stayed with me through years of ups and downs.” –Karin Gelschus, CaringBridge


“When you have a chronic disease, a long-term patient-doctor relationship that is built on mutual respect, open communication, trust and compliance is fundamental. The other half of the equation is a commitment to yourself — a commitment (and the confidence) to ask for what you need, to demand the best and most comprehensive care, and muster the courage to move on if you are dissatisfied.” - Krista Kellogg, National Psoriasis Foundation


WebMD has begun filling the editorial calendar through the summer of 2012. NHC member patient advocacy organizations and non-profit organization members interested in participating in this initiative should contact Nancy Hughes, NHC Vice President of Communications and Marketing, at




International Alliance of Patients’ Organizations (IAPO)

The National Health Council (NHC) is proud to announce the nomination of NHC’s Executive Vice President and Chief Operating Officer, Marc Boutin, to the International Alliance of Patients’ Organizations (IAPO) Governing Board. This is an exciting opportunity for the NHC to have another representative participating in the global patient movement.


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. The election will take place this March at IAPO’s 5th Global Patients Congress, which will focus on Achieving Patient-Centered Health Care: Indicators of Progress and Success. Congress attendees will examine how patient-focused health care is achieved around the world and will share, collect, and promote evidence of progress, including best practices, tools, resources, and case studies. 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.


IAPO recently highlighted the threat of counterfeit medical products to patients world-wide and urged members of the World Health Organization (WHO) Executive Board and member states to take action to protect patients. At this WHO meeting, IAPO also urged members of the WHO to involve patients at all levels in the prevention and control of non-communicable diseases. Click here to read IAPO’s testimony.

NHC Voice before Important Stakeholders

  • On February 27, 2012 – NHC Executive Vice President and Chief Operating Officer Marc Boutin presented at the PCORI National Patient and Stakeholder Dialogue Meeting
  • On January 28, 2012 – NHC President Myrl Weinberg participated in the National Hospice and Palliative Care Organization Board of Directors Meeting
  • On January 25, 2012 – Boutin participated in the meeting of the Agency for Healthcare Research and Quality (AHRQ) Effective Healthcare Program Stakeholder Group
  • On January 18, 2012- Weinberg spoke at the Fourth Annual Sentinel Initiative Public Workshop
  • On December 14, 2011 - Weinberg presented at the 2011 Pfizer Leadership Insurance Reform Summit on the future of the health insurance marketplace
  • On December 8, 2011 – Boutin participated in a panel on FDA and Drug Development at the RPM (Regulation-Policy-Market Access) Report's Annual Conference



Sharing the NHC Message and Knowledge with Others

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

In 2001, 84% of the research participants interviewed by the Center for Information and Study on Clinical Research Participation (CISCRP) in a nationwide survey said they would participate in a clinical trial again, where 16% would not. In a 2005 survey, 88% said they would participate in a clinical trial again, where only 12% said they would not. Thanks to organizations like CISCRP, progress is being made to educate the public about the benefits of participating in clinical research.

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. The organization also strives to help people locate ongoing clinical trials by supporting the website, an online tool created for the public.

In addition to educating patients about the clinical research process, CISCRP also helps research sponsors through the Communication Trial Results program. CISCRP has developed an accessible, non-promotional program to enable research sponsors to communicate trial results to volunteers in an easy to understand manner and rebuild public trust in the process. By helping to translate results posted on into easy to understand information, producing three versions of the lay summaries in various formats, and training investigative staff to field follow-up questions from volunteers, CISCRP is helping research sponsors demonstrate the results of clinical trial participation.


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.