2011 Annual Report

National Health Council Creating Lasting Endurance

Table of Contents

Overview from the Chairperson and the President

Creating Lasting Endurance

Essential Health Benefits ........................................................................................................................ 1

Comparative Effectiveness Research ..................................................................................................... 2

Delivery System Reform ........................................................................................................................ 2

The MODDERN Cures Act.................................................................................................................... 3

Reauthorization of PDUFA ................................................................................................................... 3

Medical Device User Fee Act (MDUFA)............................................................................................... 4

President’s Council on Jobs and Competitiveness ................................................................................. 4

Appropriations ........................................................................................................................................ 4

Supporting the Patient Advocacy Community

Strengthening Our Emotional Brand ...................................................................................................... 5

A Different Normal: Living with a Chronic Condition .......................................................................... 5

Standards of Excellence Certification Program® ................................................................................... 6

HealthResearchFunding.Org .................................................................................................................. 6

Health Groups in Washington ................................................................................................................ 7

BoardSource Partnership ........................................................................................................................ 8

Sharing Knowledge

Voluntary Health Leadership Conference .............................................................................................. 8

Government Relations Affinity Group and Issue Team Meetings ......................................................... 8

Chief Scientific/Medical Officers and Research Directors Meeting ...................................................... 9

Chief Financial Officers Meeting ........................................................................................................... 9

Chief Development Officers Meeting .................................................................................................... 9

Communications Affinity Group ............................................................................................................ 9

Chief Legal Officers Affinity Group .................................................................................................... 10

2010 VHA Revenue Survey ................................................................................................................. 10

2011 Management Compensation Report ............................................................................................ 10

Government Affairs Benchmarking Survey ......................................................................................... 10

Extending Our Reach

New Members in 2011 ......................................................................................................................... 11

NHC Voice before Stakeholders .......................................................................................................... 11

NHC in the News ................................................................................................................................. 12

International Alliance of Patients’ Organizations ............................................................................... 12

2011 Financial Statements ....................................................................................................................... 13

Overview from the Chairperson and the President - December 2011

This past year proved to be a challenging one for the patient advocacy community. Wrestling with health

care reform implementation and federal budgetary issues, the National Health Council (NHC) and its

member organizations spent 2011 dedicated to advancing quality research, strengthening the voice of

patients and patient advocacy organizations, and ensuring that all changes to our nation’s health care

system would, above all, focus on Putting Patients First.®

The NHC was directly responsible for framing many of the health care issues debated over the past 12

months. Working tirelessly in 2011, the NHC led the patient advocacy community in shaping what will

eventually become the essential health benefits offered in state exchanges across the country. The NHC

successfully pressed the FDA and industry to include significant patient provisions in the Prescription

Drug User Fee (PDUFA) agreement. The NHC also unveiled the HealthResearchFunding.Org database

and established a close working relationship with the Patient-Centered Outcomes Research Institute.

Together, we created the momentum that will advance our collective goal of improving the health of all

people.

This past year also brought with it the introduction of NHC’s first original legislation that will modernize

our country’s drug and diagnostics evaluation and regulatory network – the MODDERN Cures Act. With

this bill, we launched a new concept – dormant therapies – that is now part of our collective lexicon.

At the heart of each initiative undertaken by the NHC is a commitment to supporting 21st Century

research to prevent chronic conditions while seeking new treatments and cures for those already

diagnosed.

These successes and others have resulted in 15 new member organizations and businesses joining us at

the decision-making table, bringing our total membership to 111 national health-related entities.

Moving forward, the NHC will remain steadfast in representing patients on systemic health care issues by

bringing together the knowledge, expertise, and strength of our members. We will continue to

Prioritize the development of therapies that address unmet needs;

Ensure meaningful access to care that meets the individual needs of people with chronic

conditions; and

Arm patients and their family caregivers with better information, based on good science, to

help them make decisions that are aligned with their personal needs and preferences.

By standing together, speaking with one voice, and demonstrating the power of the patient advocacy

community, we believe that these goals, and more, are within our reach. Thank you for your continued

support and for your commitment to a better and healthier future for the patients we all serve.

Sincerely,

John H. Klippel, MD

Myrl Weinberg, FASAE, CAE

2011 NHC Chairperson and

President & CEO, Arthritis Foundation

President

National Health Council

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Creating Lasting Endurance

Through its collective efforts with and for the patient advocacy community, the National Health Council

(NHC) is creating an enduring legacy that will significantly impact the future of health care for millions

of men, women, and children.

In 2011, the NHC made major strides towards achieving some its main goals in the implementation of

health care reform. The NHC was influential in the creation of an essential health benefits package, health

care delivery system reform, advancing comparative effectiveness research, and securing patient-focused

language in the Prescription Drug User Fee (PDUFA) agreement.

The NHC also introduced its first ever original legislation – the MODDERN Cures Act – which will

modernize our country’s drug and diagnostics evaluation and regulatory network. This initiative will

speed up the development of new and better treatments for patients with chronic conditions.

At the heart of each initiative is a commitment to supporting 21st Century research to prevent chronic

diseases and disabilities and improve the lives of people with chronic conditions and their family

caregivers.

Essential Health Benefits

The NHC has made major strides toward achieving one of its main goals in the implementation of health

care reform: ensuring that the definition of the essential health benefits (EHB) package meets the needs of

people with chronic diseases and disabilities. Established by the Affordable Care Act (ACA), the

definition of EHBs will serve as a minimum package of services that all health care plans offered through

state health insurance exchanges must provide.

In 2010, the NHC geared up for its work on EHBs by developing a white paper that offered an overview

of the EHB provisions within ACA and their implications for people with chronic diseases and

disabilities. In 2011, an actuarial firm was hired to conduct a cost analysis of a typical plan in the Federal

Employees Health Benefits program to determine affordability for people with costly health needs. These

two products laid the groundwork for a set of recommendations and suggested regulatory language that

was shared with the Secretary of Health and Human Services (HHS) and the Centers for Medicare &

Medicaid Services (CMS).

The recommendations fall into three levels of support. The first level of patient protections would achieve

a balance of cost and quality. This level of protection for patients involves the design of benefits to avoid

discrimination, encourage equal access, and provide clear guidance for plan members. The second level

of protections would provide adequate support for patient care and decision making. The third level of

patient protections in the proposed EHB regulation would ensure access to care through the use of tools of

enforcement both for individuals as well as federal and state governments.

In August, the NHC held an essential health benefits briefing in Washington, DC, attended by more than

100 interested stakeholders and members of the press. The NHC released its white paper on EHBs and the

actuarial analysis, and presented its recommendations, which were also shared with relevant offices

within HHS and CMS. At the request of staff at CMS who are crafting the EHB regulations, the NHC has

been tasked to offer a framework for determining the benefits covered by EHB as an alternative to a

process recommended by the Institute of Medicine. The NHC is working to develop such a framework to

share with CMS.

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The NHC is proud to be the only non-government organization to have conducted meaningful,

substantive work at this level of detail to assist HHS in creating an EHB package. Moving forward, the

NHC will continue to advocate for an EHB package that best meets the needs of people with chronic

diseases and disabilities.

Comparative Effectiveness Research

The Affordable Care Act (ACA), which was signed into law in March 2010, authorized the creation of the

Patient-Centered Outcomes Research Institute (PCORI). The success of the institute, charged with

establishing a national comparative effectiveness research (CER) agenda, is a priority for the NHC and

the patient advocacy community as a whole. Our collective goal is to ensure that PCORI will provide

patients with better information, based on good science, to help them with the health care decisions they

face every day.

Midyear, the NHC hosted a meeting of representatives from seven member patient advocacy

organizations and two representatives from PCORI – Gail Hunt, a PCORI Board of Governors member,

and Joe Selby, MD, PCORI Executive Director. This meeting was one of Dr. Selby’s first activities as the

Executive Director, and it served as his introduction to the patient advocacy community. At this meeting

the discussion centered on ways for PCORI to interact with the NHC and patient advocacy organizations.

There was also a lengthy discussion about PCORI’s working definition for Patient-Centered Outcomes

Research. Following the meeting, the NHC and several of its members submitted written comments

regarding the working definition.

To further strengthen the relationship with PCORI, Debra Barksdale, a member of the PCORI Board of

Governors, spoke at the NHC’s Annual Washington Representatives Retreat. In addition, the NHC

invited and Dr. Selby agreed to be the keynote speaker at the NHC’s Annual Membership Meeting on

December 13, 2011, in Washington, DC.

Delivery System Reform

During the health care reform debate, the NHC created a pictorial diagram that incorporates the various

delivery elements to help explain what a patient-focused health care system should be. The NHC also

created a tool to evaluate emerging health care delivery system models to determine whether or not they

meet the needs of patients with chronic conditions.

This work has been shared with the new center within CMS called the Center for Medicare and Medicaid

Innovation (CMMI). Created by the ACA, CMMI has been tasked with developing and implementing

innovative payment and care models. The NHC continues to build on its relationship with CMMI and

arranged for representatives to speak at numerous NHC meetings to the CEOs and government relations

staff from member patient advocacy organizations.

A major delivery system reform included in ACA is the creation of accountable care organizations

(ACOs). ACOs will provide incentives to health care professionals and hospitals to keep down costs

while providing quality care to Medicare beneficiaries. Three ACO issues addressed in 2011 by the NHC

on behalf of patient advocacy organizations were positively acted on by CMS in its final rule for what is

known as the Shared Savings Program. The three issues were that ACOs should adhere to defined patient-

centeredness criteria; that care coordination should take into consideration the role of specialists because

people with chronic conditions frequently rely on health professionals beyond primary care; and that

quality measurements should focus on patient outcomes and satisfaction.

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MODDERN Cures Act

After years of hard work, the NHC can proudly report that its first original piece of legislation, the

Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act, was

introduced in Congress by Representative Leonard Lance (R-NJ). Introduced on November 18, the

MODDERN Cures Act will also be known by its official bill number: HR 3497. Aiming to make this

effort truly bipartisan, Representative Lance has been joined by Representative Jay Inslee (D-WA), lead

co-sponsor of the bill.

Despite medical breakthroughs, significant unmet medical needs remain for millions of people suffering

from chronic conditions. Ironically, the regulatory system rewards drug companies with longer protection

from generic competition for medicines with short clinical development timelines; it penalizes them for

developing treatments for serious unmet needs like Alzheimer’s, lupus, or cancer with much shorter

periods of time in which to market their treatments and recoup their investment.

The MODDERN Cures Act seeks to correct that market failure by creating a commensurate reward for

the development of medicines for people’s unmet needs. The legislation will also increase the number of

diagnostic tools that can predict which patients will receive the most benefit from particular medicines.

The MODDERN Cures Act also encourages the development of personalized medicine in three ways.

First, it offers an additional period of data exclusivity for a drug or biologic if a diagnostic test is

developed to help determine the appropriate patient population for the product. Second, it ensures

immediate access to patients by developing a temporary code for billing purposes. Third, it updates an

outdated Medicare reimbursement system to take into account the added utility that advanced diagnostics

provide.

Many of the NHC's members have made passage of the MODDERN Cures Act a top priority. Most

notably, the PKD Foundation featured information about the legislation at its United on the Hill event,

and the ALS Association made support for this bill one of its three "asks" of Congressional staff at the

National ALS Advocacy Day event. Now that the legislation has been officially introduced, the NHC

expects even more members to place a larger emphasis on its passage.

In addition to gaining momentum on Capitol Hill, trade publications featured the MODDERN Cures Act

in various articles. Representative Lance and the NHC issued a joint news release that was picked up by

more than 50 websites including Reuters, the Boston Globe, and the Washington Business Journal. The

full news release can be accessed at www.nationalhealthcouncil.org/NHC_Files/media/MODDERN

SolutiontoNewCures-Diagnostics.pdf. In addition, a special webpage about the MODDERN Cures Act

was created by the NHC – www.puttingpatientsfirst.net/moddern.

Reauthorization of PDUFA

One of the key responsibilities of the 112th Congress is to reauthorize the Prescription Drug User Fee Act

(PDUFA). PDUFA is an agreement between the Food and Drug Administration (FDA) and the

pharmaceutical industry in which the industry agrees to pay user fees, and, in return, the FDA promises to

meet certain benchmarks, mostly related to expediting the time it takes to review potential drug

candidates.

In September, the FDA and industry representatives came to a final agreement on the reauthorization of

PDUFA and sent their proposal to HHS Secretary Sebelius and the Office of Management and Budget for

approval. The agreement will be submitted to Congress, which must pass reauthorization legislation by

the fall of 2012.

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The NHC was active in the PDUFA reauthorization process throughout the year and successful in having

inserted into the final agreement provisions that speed the development of medicines for patients with

chronic diseases and disabilities, particularly for those with unmet medical needs.

The three key provisions that were championed by the NHC were the development of an objective

benefit-risk framework that includes robust patient input, greater use of biomarkers and patient reported

outcomes in clinical trials, and provisions to encourage development of treatments for rare disorders.

In 2011, the NHC testified before Congress on the reauthorization of PDUFA, providing a united patient

voice on an important issue that will greatly impact access to new drugs. The NHC was also successful in

placing an opinion article co-written by NHC President Myrl Weinberg and Sally Greenberg, the

Executive Director of the National Consumers League, on balancing the needs of consumers and patients

in the PDUFA agreement. To further advance the patient community’s position on PDUFA, a joint

advertisement by patient and provider groups supporting the reauthorization was orchestrated by the NHC

and published in newspapers and websites that target members of Congress and their staff.

Medical Device User Fee Act (MDUFA)

Another focus of the patient community has been the reauthorization of the Medical Device User Fee Act

(MDUFA). In 2011, the NHC provided formal comments to HHS on MDUFA, addressing various issues

important to people with chronic conditions. The NHC strongly encouraged the FDA to include in the

MDUFA reauthorization agreement an objective, qualitative framework to determine the benefits and

risks of devices. The final MDUFA reauthorization agreement has not been made public as of the time

this report was printed.

President’s Council on Jobs and Competitiveness

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,

available on the web at http://files.jobs-council.com/jobscouncil/files/2011/10/JobsCouncil_Interim

Report_Oct11.pdf.

Appropriations

The elections in late 2010 brought a number of new faces to Washington and a new focus on greatly

reducing the amount of money spent on federal programs. Members of the NHC’s Government Relations

Affinity Group (GRAG) and NHC staff developed strategies for the patient advocacy community to

defend spending on vital health programs that benefit the patient community, and in the end, individual

patients.

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In an effort to present a united voice and to strengthen mutual efforts to support federal programs that

serve people with chronic conditions, the NHC gathered information from member patient advocacy

organizations about their requests for federal appropriations for Fiscal Year 2012.

The NHC created a survey to capture the funding requests that

member organizations were proposing and continued to track actions

throughout the year.

At the request of its members, the NHC focused on funding the

entire health enterprise, as depicted in the diagram to the right.

Through the remainder of the year, the NHC reiterated its message

that reducing the deficit should not come at the expense of the health

of patients with chronic conditions.

Moving forward, the NHC will continue to support government

funding that spans the entire health care system.

Supporting the Patient Advocacy Community Strengthening Our Emotional Brand

In 2011, the National Health Council embarked on a new initiative to strengthen its emotional brand and,

by extension that of the patient advocacy community. The first step was to conduct qualitative and

quantitative gap surveys of members and non-members. This was followed by a survey of Capitol Hill

staff, representatives of the Administration, and members of the media. The surveys were conducted by

Brightline Media, which will prepare an analysis of the data and recommend an action plan based on the

survey results.

In a further effort to evaluate its performance, the NHC also developed an organizational dashboard

aimed at charting the NHC’s progress on building its brand. These reports were presented quarterly to the

NHC Board of Directors and members of the Voluntary Health Agency Committee.

Another component in tracking the growth of NHC’s emotional brand is its membership retention and

engagement rates. The NHC began developing a member engagement scorecard intended to monitor

levels of participation by individual member organizations, with 2011 as the benchmark year. The

scorecard will help the NHC Membership Committee and staff identify members who may not be aware

of all of the opportunities for participation and help the NHC identify where it needs to maximize

membership value.

A Different Normal: Living with a Chronic Condition

The National Health Council, in partnership with WebMD, launched a new blog geared towards people

with chronic diseases and disabilities – A Different Normal: Living with a Chronic Condition.

The website features guest bloggers from NHC member organizations, as well as chronic disease experts

from WebMD. This site provides NHC members one of the largest, online health platforms for sharing

information and raising awareness; the flexibility of contributing content on an ad-hoc basis as it fits a

member organization’s mission; and the opportunity to build online presence because the blog posts are

“tagged” and cross referenced on other WebMD pages.

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The NHC thanks the following NHC members

that have participated in this initiative through

November 2011:

• CaringBridge

• National Hospice and Palliative Care

Organization

• Huntington’s Disease Society

• Marfan Foundation

• 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

Standards of Excellence Certification Program®

The NHC’s Standards of Excellence Certification Program®

demonstrates that member patient advocacy

organizations (also known as voluntary health agencies or VHAs) are committed to the highest standards

of transparency, accountability, and public stewardship. In 2011, the Standards of Excellence certification

review began for two new organizations -- the Amputee Coalition of America and the American

Foundation for Suicide Prevention to achieve full compliance for the first time. Also in 2011, fourteen

members completed their triennial recertification reviews.

To assist members with enhancing transparency and providing consistent public communication, the

NHC asked John Seng, President and Founder of Spectrum, a public relations firm that specializes in

science and health care, to discuss at the February VHA Committee meeting how nonprofit organizations

can prepare for a media crisis.

Later in the year, the NHC undertook a new public initiative to promote the Standards of Excellence

Certification Program® as a way for donors to easily identify patient organizations that are committed to

the highest operational standards. The NHC distributed a news release encouraging end-of-year giving to

patient advocacy groups that are members of the NHC and directing donors to look for the Standards of

Excellence Certification Program® logo on member websites. The NHC plans to continue this

promotional effort in 2012.

HealthResearchFunding.Org

HealthResearchFunding.Org was officially announced to the National Institutes of Health (NIH) research

community on January 31. The database, which was created by the NHC with input from the NIH Office

of Extramural Programs, makes information on worthwhile but unfunded research proposals available to

NHC members. The goal of HealthResearchFunding.Org is to foster support for new research that will

result in new and better treatments. Originally opened to NHC patient advocacy organization members,

the service was expanded to include all NHC member professional and membership associations and

member nonprofit organizations.

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At the end of November 2011, the database had registered

1160 official investigators

More than 500 NIH-reviewed research proposals

Approximately 25 NHC member-reviewed research proposals

15 requests for proposals from NHC members

14,152 unique visitors to the database

2,495 searches for funding sources

The NHC continues to encourage its member patient advocacy organizations and other nonprofit

organizations to invite investigators to register in the database and post research proposals that have peer-

reviewed by NHC member organizations, deemed of scientific and technical merit, but did not receive

funding. NHC patient advocacy organization members and other nonprofit members are also able to add

their own requests for research proposals to the database and summaries of potential research projects for

possible collaboration with other organizations.

Since January 31, HealthResearchFunding.Org has been featured in various media outlets, including

The NIH’s Office of Extramural Research blog

Science Magazine’s Science Insider page

BIO newsletter, Biotech Now

Virginia Tech, Ohio State University, and University of Minnesota websites

GenomeWeb blog, F1000 blog, and Synapse blog

HealthResearchFunding.Org was made possible with support from Pfizer Inc and the National Institutes

of Health.

Health Groups in Washington

Since its first printing in 1975, the NHC’s Health Groups in

Washington directory has become recognized as the single,

most useful resource for locating major, non-governmental

health-related organizations in the Washington metropolitan

area.

The directory is published every other year and a new

version was published in November, with the support of the

UnitedHealth Foundation.

Free copies of the directory were distributed to all Members

of Congress, NHC member organizations, and select

reporters. Approximately 900 organizations and businesses

are included in the most recent edition, which is available in

both print and electronic format. Ordering information is

available on the publications page of the NHC website at

www.nationalhealthcouncil.org/pages/publications.php.

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BoardSource Partnership

BoardSource membership provides nonprofit organizations with the tools they need to build a high-

performing board. NHC members use its resources and services to find solutions, leadership tips, and

governance knowledge about board-related issues. In 2011, NHC member organizations enrolled 100 of

their board members and key staff at the national and chapter levels in BoardSource, using a special NHC

discount offer.

Sharing Knowledge

Voluntary Health Leadership Conference

Each year, the NHC brings together the chief executive officers and their volunteer leaders from member

patient advocacy organizations to learn about the latest in health research and health care policy, and to

share best practices for meeting their organizational goals to serve people with chronic diseases and

disabilities and their family caregivers.

The 24th Annual Voluntary Health Leadership Conference was held in Sanibel Harbour

Resort in Fort Myers, Florida, in February 2011. Attendees heard from a number of speakers, including

National Institutes of Health Director Francis Collins, who discussed the latest advances in health

research. A special webpage was created – www.nationalhealthcouncil.org/pages/2011-Leadership-

Conference.php – with links to video interviews of the nationally known presenters and copies of the slide

presentations.

The 24th Annual Voluntary Health Leadership Conference was made possible with the support of the

following businesses and organizations.

Premier Sponsors

AstraZeneca Pharmaceuticals

Amgen

Eli Lilly and Company

Johnson & Johnson

Novartis Pharmaceuticals

Pfizer Inc

Roche

Leading Sponsors

AdvaMed

Bristol-Myers Squibb Company

Supporting Sponsors

American College of Cardiology

Baker & Daniels

Bayer Health Care Pharmaceuticals

Biotechnology Industry Organization (BIO)

Community Health Charities

Drug Information Association

Edelman

National Pharmaceutical Council

Government Relations Affinity Group and Issue Team Meetings

The NHC’s annual Washington Representatives Retreat was held December 1-2 in Annapolis, Maryland.

At the meeting, attendees heard several speakers discuss current public policy topics, such as comparative

effectiveness research, health care reform implementation, and legislation to develop new and better

treatments for people with chronic conditions. Speakers included Agency for Healthcare Research and

Quality Director Carolyn Clancy, FDA Center for Devices and Radiological Health Director Jeff Shuren,

and columnist Roger Simon from Politico.

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Representatives from NHC VHA members also discussed policy priorities for 2012, which include health

care reform implementation, appropriations, and FDA issues.

In addition to monthly Government Relations Affinity Group (GRAG) meetings for representatives from

patient advocacy organizations, the NHC brought together representatives from all member categories

serving on three Issue Teams. These teams research issues and assist in developing guiding principles that

inform NHC policy action.

In 2011, the NHC began a regular series of brown bag lunch meetings for the government relations and

grassroots advocacy staff from VHAs as a catalyst to discuss best practices for various aspects of

grassroots advocacy. Two luncheons were held to discuss how to conduct annual legislative fly-in events

and strategies to recruit and retain a strong base of advocates. Starting in 2012, this group will be

formalized into a Grassroots Team. The group will hold regular meetings to discuss issues and best

practices related to grassroots action.

Chief Scientific/Medical Officers and Research Directors Meeting

The annual meeting of the chief scientific/medical officers and research directors from VHA member

organizations took place on December 6. The meeting included discussion of federal funding for health

research, the NIH National Center for Advancing Translational Sciences, the 2012 BIO/Personalized

Medicine Coalition Reimbursement Summit, the MODDERN Cures Act, and the NHC-NIH database of

unfunded research.

Chief Financial Officers Meetings

The chief financial officers from the NHC’s member VHAs and member organizations of the National

Human Services Assembly gathered twice in 2011 in Washington, DC. The first of the meetings was held

in May and featured presentations on implementation of health care reform, cost control decisions made

in reaction to the economic downturn, and reporting and compliance requirements of the new IRS Form

990. The second meeting was held in November and focused on executive compensation and benefits,

and cloud computing. The chief financial officers will meet again in the spring of 2012.

Chief Development Officers Meeting

The NHC held its inaugural webinar meeting of the chief development officers from member patient

advocacy organizations in October. This webinar included presentations on risk management issues in

special events and the impact of deficit reduction proposals on income development. The chief

development officers from the NHC’s member VHAs will meet in the spring and fall of 2012. The group

will address policy and regulatory issues that impact VHA income development and provide a forum for

sharing best practices.

Communications Affinity Group

The second meeting of the NHC Communications Affinity Group was held in May and afforded

participants the opportunity to interact with and learn from the Director of Communications of the FDA’s

Center for Drug Evaluation and Research, Julie Zawisza. During the NHC meeting, the group talked

about the importance of getting feedback from patient organizations in order for the FDA to better

understand the needs of the general public and specific patient populations. Participants also learned

about current NHC initiatives and various opportunities for members to engage with the NHC.

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Based on a survey of communications staff, the group will meet once a year in person and then by

teleconference or webinar one other time during the year.

Chief Legal Officers Affinity Group

The senior legal staff from the NHC’s member VHAs will meet in the spring and fall of 2012. This is the

newest affinity group for NHC members, and the proposed agenda will include emerging legal issues that

affect VHAs and opportunities for sharing best practices.

2010 VHA Revenue Survey

To help patient advocacy groups benchmark their revenue streams against those of their peers, the NHC

produced the 2010 VHA Revenue Survey. Forty-one member organizations took part in the annual

survey, which covered revenues for fiscal years 2008, 2009, and 2010. As a member benefit, all VHA

members received a generic report detailing aggregate revenue data.

Participants in the survey also were given a confidential, customized report comparing their results

against their peer group (small, medium, large, and extra-large organizations) and against all survey

participants in general. Results from the survey indicated an uptick in total revenue.

2011 Management Compensation Report

To help member voluntary health agencies 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.

Fifty-four NHC and National Human Services Assembly member organizations participated in this year’s

report. The Management Compensation Report was made available for purchase in December.

Government Affairs Benchmarking Survey

The NHC, in partnership with the Leukemia & Lymphoma Society, conducted a government affairs

benchmarking survey in 2011. All participants received a summary of the aggregate results that showed,

in general, a majority of patient advocacy organizations include public policy as a priority in strategic

planning.

The NHC separately surveyed the Government Affairs Director, CEO, and CFO from each VHA member

to gain a better understanding of the structure and role of the government affairs programs across the

VHA community.

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Extending Our Reach

New Members in 2011

The strength of the NHC comes from the fact that it provides a dynamic forum in which all stakeholders

can meet for reasoned discussion, effective collaboration, and persuasive advocacy. We are honored to

have the following organizations and businesses join in this past year and become part of the collective

effort to provide a united voice for people with chronic diseases and disabilities and their family

caregivers.

Voluntary Health Agencies

American Lung Association

Amputee Coalition of America

American Foundation for Suicide Prevention

Professional and Membership Associations

Medical Device Manufacturers Association

National Council for Community Behavioral

Healthcare

National Hospice and Palliative Care

Organization

SNM

Nonprofits with an Interest in Health

ABMRF/The Foundation for Alcohol

Research

Global Healthy Living Foundation

Health HIV

National Patient Advocacy Foundation

Business and Industry

Astellas Pharma US

Eisai Inc.

Purdue Pharma, LP

WellPoint Inc.

NHC Voice before Stakeholders

In 2011, the NHC saw a marked increase in the number of requests for staff to present before influential

health care and research entities on issues related to various NHC initiatives, most notably the

MODDERN Cures Act, PDUFA reauthorization, and essential health benefits. NHC staff presented

before these groups and at other events:

Agency of Healthcare Research and Quality stakeholder meeting

AIDS United’s Public Policy Council

American Academy of Family Physicians 2011 State Legislative Conference

Aspen Institute panel on Consumer Engagement and Accessibility of Health Information

Brookings Institution meeting on the Patient Medication Information Project

Brookings Institution Sentinel Initiative public meeting

California Healthcare Institute meeting on Therapeutics for Neglected Diseases

Cambridge Healthtech Institute's Conference on Encouraging Developments for Therapeutics for

Neglected Diseases

Council for American Medical Innovation Partner Meeting

Hispanic Federation

Iowa Impact Medical Innovation Summit

Northeast Advocacy Summit on essential health benefits

Partnership to Improve Patient Care

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The NHC also took part in these and other meetings and events of its member organizations:

AdvaMed briefing on accountable care organizations

ALS Foundation’s Board of Directors meeting

Biotechnology International Organization (BIO) Annual Meeting

Drug Information Association Annual Meeting

Epilepsy Foundation’s Organizational Review Committee

Grifols Public Policy Luncheon

National Patient Advocate Foundation Policy Consortium

Pharmaceutical Researchers and Manufacturers Association’s Annual Meeting

PKD Foundation Legislative Conference

Sjogren's Syndrome Foundation's Board of Directors meeting

NHC in the News

Because of its work in various areas related to health care reform implementation, the NHC was called

upon to provide comment and insight on important health care issues in 2011. Here are some of the

publications in which the NHC was mentioned or quoted:

The Hill, Washington Post, and Wall Street Journal articles about the NHC’s recommendations

for establishing essential health benefits (EHB)

CQ HealthBeat, Politico, and Inside Health Policy articles on NHC's EHB briefing

American Journal of Pharmacy Benefits op-eds about the MODDERN Cures Act and EHB

FDA News, Pink Sheet, The Gray Sheet, and BioCentury also featured articles on the

MODDERN Cures Act

The Hill op-ed by NHC President Myrl Weinberg and Sally Greenberg, the Executive Director of

the National Consumers League, on balancing the needs of consumers and patients in the

reauthorization of the Prescription Drug User Fee Act (PDUFA)

Genetic Engineering & Biotechnology News article on the reauthorization of PDUFA

National Journal article on determining what basic health care plans should cover

International Alliance of Patients’ Organizations (IAPO)

The International Alliance of Patients’ Organizations (IAPO) represents patients of all nationalities across

all disease areas, and the NHC was instrumental in IAPO’s creation and operations.

In April 2011, IAPO participated in the World Health Organization (WHO) Global Forum and Ministerial

Conference on Non-communicable Diseases (NCDs) in Moscow. The WHO Forum was designed to

bring together a wide group of stakeholders to share views and experiences on the challenges and

opportunities available to patient groups in the area of NCD prevention, treatment, and control.

Participants identified and committed their organizations to priority actions to strengthen global action in

prevention and control of NCDs. Several NHC member organizations were involved in the forum.

At the NHC’s September Board meeting, Jeremiah Mwangi, IAPO’s Policy and External Affairs Director,

gave a brief update on the organization’s work and potential areas of relevancy for U.S. health care issues

and the patient community at large.

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