Government Relations Programs in

Voluntary Health Agencies

2006 Benchmarking Report

Credits:

Editing: Susan H. Lau

Graphing: Andrea Frydl

This report was made possible by a generous grant from Merck & Co., Inc.

© 2007 by National Health Council

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Executive Summary In June 2006, the National Health Council (NHC) asked its member voluntary health

agencies (VHAs) to participate in a government relations benchmarking study.

Respondents were asked to describe their government relations activities at both the

state and federal levels and their participation in the Council’s Government Relations

Affinity Group (GRAG). They were also asked to indicate their interest in exploring the

creation of a 501(c)(4) organization by the Council.

Surveys returned by 36 member VHAs were analyzed, and follow-up interviews were

conducted with four VHA CEOs and three senior government relations staff. Eight

key findings and three themes were identified.

FINDINGS

Finding 1 — All of the VHAs analyzed are engaged in some government relations

activities, with the vast majority having at least a small number of dedicated in-house

staff.

Finding 2 — VHAs spend a significantly lower percentage of total revenue on

government relations activities than on other major areas of activity, such as research

or programs.

Finding 3 — VHA government relations resources are primarily focused on lobbying,

public policy development, and building grassroots capacity.

Finding 4 — Grassroots capacity among VHAs is relatively low and increasing it is

viewed as both a top priority and a major challenge.

Finding 5 — The vast majority of VHAs focus their federal lobbying efforts on the

National Institutes of Health (NIH), Congress, and the Department of Health and

Human Services (HHS).

Finding 6 — A significant percentage of VHAs are currently considering or engaging

in federal policy initiatives on systemic health care issues.

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Finding 7 — A majority of VHAs regularly participate in the NHC’s Government

Relations Affinity Group (GRAG) and find value in its work.

Finding 8 — VHAs need more information before they would be willing to consider

exploring the creation of a 501(c)(4) organization to expand the advocacy activities of

the VHA community under the umbrella of the National Health Council.

THEMES

Theme 1 — There is no standard staffing model for VHA government relations

programs.

Theme 2 — The growth and development of government relations programs often

depends on having champions who can sell the programs internally to both staff and

volunteers.

Theme 3 — Taking VHA government relations programs to the next level will require

a major investment in grassroots capacity building.

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Introduction

The voluntary health agencies (VHAs) that belong to the National Health Council

(NHC) represent an estimated 100 million people with chronic disease and disability.

From the largest to the smallest, they share certain unique characteristics: a mission

to prevent or cure the condition affecting their constituency; a governance structure

that empowers volunteers; and a reliance on direct voluntary contributions from the

public as a significant source of funding.

With few exceptions, these VHAs have incorporated advocacy into their activities. This

benchmarking study was undertaken to assess the current state of government

relations programs within small, medium, and large organizations and to identify the

challenges and opportunities in further developing those programs.

It is revealing, but perhaps not surprising, that each government relations program is

in part a reflection of its unique organization. Certainly, the issues are different but

so too are the staffing models that have evolved. The commitment level of the

volunteer leadership varies as well.

And yet there are striking similarities. Virtually all of the VHAs surveyed use the same

“tools of the trade,” as resources permit, in pursuing their government relations

activities. And most identify similar goals — and challenges — for their advocacy

programs.

Finally, this study examines the role of the National Health Council in supporting and

enhancing the government relations activities of its member VHAs.

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Methodology In the spring of 2006, the NHC launched its benchmarking study of VHA government

relations programs. A survey instrument was developed and e-mailed to member

VHAs. The survey collected information about government relations activities at both

the state and federal levels. In addition, VHAs were asked to evaluate their

participation in the Council’s Government Relations Affinity Group (GRAG) and to

indicate their interest in having the Council form a 501(c)(4) organization.

The study was guided by a design team of VHA CEOs and senior government

relations staff:

Steve Gibson

Vice President, Government Relations

& Public Affairs

The ALS Association

Dwayne Howell

President & CEO

The Leukemia & Lymphoma Society

John H. Klippel, MD

President & CEO

Arthritis Foundation

Bill McLin

Executive Director

Asthma & Allergy Foundation of

America

Randy Rutta

Vice President, Government Relations

Easter Seals

Kay Wissmann

Director of Government Affairs

Y-ME National Breast Cancer

Organization

Gail Zimmerman

President & CEO

National Psoriasis Foundation

Primary data collection and analysis for the study were performed by Megan Gordon

Don, a former GRAG chair who worked for several NHC member organizations

before forming her own consulting practice, MGD Strategies. She currently serves as

the director of government affairs for the Pancreatic Cancer Action Network.

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Additional data analysis was provided by Susan Lau, NHC vice president of VHA

relations.

Following the survey, interviews were conducted with four VHA CEOs by Susan Lau

and with three senior government relations staff members by Joseph LaMountain,

NHC acting director of government affairs. They included:

Cindy Brownstein

Chief Executive Officer

Spina Bifida Association

Steve Gibson

Vice President, Government Relations

& Public Affairs

The ALS Association

Harry Johns

President & CEO

Alzheimer’s Association

Bill McLin

Executive Director

Asthma and Allergy Foundation of

America

Sheila Rittenberg

Director of Advocacy

National Psoriasis Foundation

Clarke Ross

Chief Executive Officer

CHADD

Dan Smith

National Vice President of Federal and

State Government Relations

American Cancer Society

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Survey Participants Small (Total revenues under $5 million)

American Autoimmune Related Diseases Association

American Tinnitus Association

Asthma and Allergy Foundation of America

CHADD

International Pemphigus Foundation

Kidney Cancer Association

Myasthenia Gravis Foundation

National Foundation for Ectodermal Dysplasias

National Marfan Foundation

National Sleep Foundation

Osteogenesis Imperfecta Foundation

The Paget Foundation

RESOLVE, The National Infertility Association

Restless Legs Syndrome Foundation

Sjogren’s Syndrome Foundation

Us TOO International

Y-ME National Breast Cancer Organization

Total number of respondents in group........................................................... 17

Total number of member VHAs in group ........................................................ 24

Medium (Total revenues $5 million - $15 million)

Alpha-1 Foundation

Lupus Foundation of America

National Osteoporosis Foundation

National Psoriasis Foundation

Spina Bifida Association

Total number of respondents in group............................................................. 5

Total number of member VHAs in group .......................................................... 6

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Large (Total revenues over $15 million)

The ALS Association

Alzheimer's Association

American Cancer Society

American Diabetes Association

American Heart Association

American Kidney Fund

Arthritis Foundation

Easter Seals

Epilepsy Foundation

Huntington’s Disease Society of America

The Leukemia & Lymphoma Society

Mental Health America*

National Multiple Sclerosis Society

Prevent Blindness America

* formerly National Mental Health Association

Total number of respondents in group........................................................... 14

Total number of member VHAs in group ........................................................ 17

Total number of survey respondents......................................................... 36

Total number of member VHAs................................................................ 47

In all, 40 VHAs responded to the survey out of a possible 47, yielding an overall

response rate of 85 percent. However, four of the responding organizations indicated

that they do not have an established government relations presence. For the purposes

of analyzing the survey data, only the 36 statistically relevant responses were used.

(Note that in the presentation of the data, some percentages may not equal 100 due

to rounding.)

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Findings and Discussion

Finding 1

All of the VHAs analyzed are engaged in some government relations

activities, with the vast majority having at least a small number of dedicated

in-house staff.

Eighty-nine percent of VHAs have some in-house government relations staff, and the

majority of those (69.4 percent) have one to five dedicated positions. However, none

of the small or medium-sized VHAs reported having more than four government

relations staff.

It is also interesting to note the wide range of government relations staffing levels

among the large organizations:

• Seven respondents have five or fewer staff.

• Three respondents have between 15 and 25 staff.

• Two respondents have between 40 and 45 staff.

• One respondent has 96 staff.

• One respondent has 200 staff.

Conversely, four organizations — all of them small VHAs — have no dedicated in-

house government relations staff. However, all are participating in government

relations activities to some degree:

§ Two rely primarily on volunteers with minimal staff support.

§ Two report that their federal public policy work is primarily handled by national

staff, an indication that government relations activities may be assigned to staff

with responsibility for other areas.

§ None has significant involvement in state government relations activities.

Figure 1 shows the average number of government relations staff by size of

organization.

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The survey also revealed that fully half of VHAs rely primarily on the use of in-house

staff to conduct their government relations activities. However, there are six different

government relations staffing models found among survey respondents. (See Figure 2)

10

Overall, it is important to note that all of the survey respondents are working on

government relations in some fashion and that the vast majority of VHAs have at least

one dedicated in-house staffer devoted to advocacy.

Finding 2

VHAs spend a significantly lower percentage of total revenue on government

relations activities than on other major areas of activity, such as research or

programs.

Despite committing dedicated staff resources to government relations work, survey

respondents on average spend less than 1 percent of their organizations’ total

revenue on direct expenditures for such activities. Significantly, large VHAs spend the

least on a percentage basis, with barely three quarters of 1 percent of revenue

devoted to government relations. Medium-sized VHAs topped the list with an average

of 3.4 percent spent on government relations activities. (Note that these figures

exclude salaries.) (See Figure 3)

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And yet, without exception, the CEOs interviewed view advocacy as a priority area,

though not necessarily on a par with other mission areas, like research or programs.

Cindy Brownstein is the CEO of the Spina Bifida Association (SBA), a medium-sized

VHA. She said that advocacy is a significant portion of her budget and believes that

VHAs in general are investing more than in the past. “It’s a conscious decision you

have to make,” she said. “Especially if you are in Washington, it’s a huge advantage.

I see a direct tie from advocacy to what we are able to provide in education and

services to people with spina bifida.”

At the Alzheimer’s Association, advocacy is among the top priorities, said CEO Harry

Johns. “There is no way to achieve our mission without mobilizing the federal

government’s resources,” he said. He acknowledged that the association, which is

classified as a large VHA, does not spend as much on advocacy as on other mission

areas, adding, “in terms of relative investment, it will go up over time as opportunities

to have an impact increase.”

Advocacy is a “third but distinct” priority, according to CHADD CEO Clarke Ross. The

first priority for the small VHA is to provide science-based information, followed by

support groups and community services for people with attention deficit/hyperactivity

disorder. He feels this is an appropriate mix. Ross describes advocacy as a journey,

where an individual starts out alone, gradually learns to do personal advocacy, and

eventually realizes that the problems are systemic issues requiring a larger movement.

“We have a number of people who have evolved that way,” he said. “I want to better

articulate and accelerate that journey — and develop the infrastructure to back it up.”

Bill McLin, executive director of the Asthma and Allergy Foundation of America (AAFA),

said, “Advocacy is dear to my heart.” In his small VHA, he ranks government relations

work as second to providing information. “It’s the ‘provide’ versus ‘obtain’

philosophy: If we can’t directly fund a lot of research, we can advocate for NIH

funding.”

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Backing up the CEOs’ remarks, 69 percent of survey respondents said that federal

public policy is included as a priority area during the organizations’ strategic planning

process. (See Table 1)

Table 1: Identification of Public Policy as a Priority Area, All Respondents

Percent of Responses

Number of Responses

Yes 69% 25

No 31% 11

Total 100% 36

Finding 3

VHA government relations resources are primarily focused on lobbying, public

policy development, and building grassroots capacity.

Government relations functions were identified as the following: federal lobbying,

state lobbying, public policy development, media/communications,

grassroots/legislative network, legal, and support staff. On average, large VHAs

covered five of those functions, and medium-sized and small VHAs covered four.

As illustrated in Figure 4, VHAs are primarily focusing their resources on lobbying at

both the federal and state levels, followed by grassroots activities and public policy

development.

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At the Federal Level

Survey respondents were asked to rank the challenges faced by their organizations at

the federal level on a scale of 1 to 5, with 5 being most important. An overwhelming

88 percent gave a rating of 4 or 5 to building grassroots capacity. Getting noticed by

the national media got a 4 or 5 ranking from 70 percent of respondents, while 62

percent gave high importance to building name recognition and policy development.

(See Figure 5)

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At the State Level

Some 22 VHAs have offices at the state level, but not all have offices in every state.

Eighteen organizations reported working with their state legislatures to move

legislation. (See Table 2)

Table 2: Percentage of Respondents Working On State Legislation

Percent of Responses

Number of Responses

Yes 78% 18

No 22% 5

Total 100% 23

When asked to rank the challenges at the state level, survey respondents showed

remarkable consistency, identifying most of the same factors they had noted as

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challenges on the federal level. Again, building grassroots capacity was the number-

one challenge. Other highly ranked challenges include building name recognition,

securing resources for state government relations activities, policy development, and

getting noticed by the media. (See Figure 6)

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Priority Rankings for New Staff

Survey respondents were asked to rank the priorities for new federal government

relations staff. Small VHAs placed major emphasis on acquiring new staff for federal

lobbying, with some 64 percent of respondents rating it most important. Building

grassroots capacity was the second ranked-priority, rating a 4 or 5 by 67 percent of

respondents. (See Figure 7)

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Medium-sized VHAs overwhelmingly ranked building grassroots capacity as the top

priority, followed by federal lobbying and policy development. (See Figure 8)

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Large VHAs were even stronger in ranking grassroots capacity as the number-one

priority — given a 4 or 5 rating by 84 percent of respondents. This group also gave

high importance to policy development and media advocacy. (See Figure 9)

The desire among VHAs for increased grassroots capacity is also reflected in the next

finding.

Finding 4

Grassroots capacity among VHAs is relatively low and increasing it is viewed

as both a top priority and a major challenge.

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The majority of the VHAs surveyed have fewer than 2,000 grassroots volunteers who

have signed up to work on federal and state issues, as shown in Figure 10.

In addition, regardless of the number signed up, the majority of VHAs consider less

than 25 percent of their grassroots to be active.

Using the upper ranges of the projections in Figure 10, the Council’s VHAs as a group

have approximately 2.8 million grassroots volunteers. To put those numbers into

perspective, even if 100 percent of the current grass roots were considered active, the

VHA community’s action alerts are currently reaching a mere 3 percent of the

estimated 100 million Americans with chronic diseases and disabilities. And that

figure does not include their family caregivers.

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On a positive note, the majority of respondents said that their grassroots numbers

have increased in the past two years. (See Figure 11)

Activating the Grass Roots

Figure 12 shows the types of action during the past year that VHAs requested of their

grassroots volunteers on federal issues. The number of respondents appears in

parentheses next to the activity description. A majority of the 36 responding

organizations reported engaging in most of the activities listed. Using various methods

to contact members of Congress and holding lobby days in Washington were the most

popular activities.

This graph also shows the difference in emphasis given to the various activities by

different-sized VHAs. Small and medium-sized organizations appear to focus on

broad-stroke activities like calling or writing the White House, Congress, and federal

agencies. In contrast, large VHAs are more likely to have the resources to get

grassroots volunteers to attend town hall meetings, invite members of Congress to

local events, and make editorial board visits.

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Figure 13 shows the types of action on state issues that VHAs requested of their

grassroots volunteers at the state level. The number of respondents appears in

parentheses next to the activity description. Again, most organizations surveyed

participate in most of the activities listed, with the most popular being contacting state

legislators and governors.

It is also clear that large VHAs are much more likely to be activating their grassroots

volunteers on the state level than either small or medium-sized VHAs.

22

Building Grassroots Capacity

Most survey respondents place primary responsibility for building grassroots capacity

with national government relations staff. About a quarter of VHAs give primary

responsibility to state-based staff in chapters or affiliates. (See Figure 14)

23

The responsibility falls even more heavily on national staff when it comes to building

capacity among “grass tops,” defined as elite volunteers, such as those in leadership

positions in the organization or those with direct political connections to policy makers.

(See Figure 15)

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Grassroots Challenges

What are the primary challenges of building grassroots capacity at the federal and

state levels? At the federal level, some 29 percent of respondents ranked “keeping

volunteers active and engaged” as their top challenge. “Increasing the number of

grass roots” was identified by 24 percent of respondents. (See Figure 16)

However, there were some interesting differences when the data was broken out by

organization size. Both large and small VHAs identified “keeping volunteers active and

engaged” as a major challenge, but it was selected by only 25 percent of small VHAs,

compared to 38 percent of large VHAs. At the same time, 46 percent of the large

organizations identified “increasing the number of grass roots” as the primary

challenge.

Medium-sized VHAs felt the primary challenges were educating grassroots volunteers

about the issues and training them on how to get the message across, with each

garnering 40 percent of respondents. (See Figures 17, 18 and 19)

25

26

The data for all respondents were similar in identifying the primary grassroots

challenges on the state level. Again, keeping volunteers active and engaged was

number one — identified by 35 percent of respondents. However, 25 percent

identified “educating volunteers about the issues,” edging out “increasing the number

of grass roots,” which garnered a 20 percent response. (See Figure 20)

27

Similarly, the differences by organization size were noteworthy. Large VHAs were

consistent in identifying the primary challenges as “keeping volunteers active and

engaged” (36 percent) and “increasing the number of grass roots” (36 percent). Forty-

three percent of small VHAs also identified “keeping volunteers active and engaged”

as the big challenge. However, all of the medium-sized organizations said that

“training on how to get the message across” was job one on the state level. (See

Figures 21, 22, and 23)

28

29

VHAs appear to recognize the importance of building their power base among local

volunteers. As discussed in Finding 3, survey respondents selected grassroots capacity

building as one of the top priorities for additional government relations staff

resources.

Finding 5

The vast majority of VHAs focus their federal lobbying efforts on the National

Institutes of Health, Congress, and the Department of Health and Human

Services.

Given the nature of the VHAs’ missions, it is not surprising that virtually all of them

work with the National Institutes of Health (NIH), Congress, and the Department of

Health and Human Services (HHS). Figure 24 shows the average frequency of contact

with the five government entities that respondents reach out to most often.

30

Table 3 looks at the data by organization size. The total number of respondents in

each size category appears on the second line, with both the number and percentage

of respondents given for each category below.

A significant majority of all VHAs frequently contact NIH. That also holds true for

Congress, except for small VHAs where only 41 percent reported frequent contact.

Small VHAs were much less likely than the medium-sized and large groups to contact

HHS. In addition, the percentages drop for small and medium-sized VHAs but remain

above 50 percent for large VHAs when it comes to frequent contact with the Centers

for Disease Control and Prevention (CDC) and the Centers for Medicare and Medicaid

Services (CMS). Frequent contact with the Food and Drug Administration (FDA) was

lower for all groups.

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Table 3: Frequency of Contact with Government Entities by Organization Size

The survey also showed that the VHA community as a whole is reaching into

practically every branch, department, and agency of the federal government. This is

understandable given the variety of diseases and disabilities represented by the

Council’s VHA members. (See Figure 25)

Frequently Occasionally Never Small

(17) Medium

(5) Large (14)

Small (17)

Medium (5)

Large (14)

Small (17)

Medium (5)

Large (14)

NIH 11 (65%) 5 (100%) 11 (79%) 5 (29%) 0 3 (21%) 1 (6%) 0 0

Congress 7 (41%) 5 (100%) 13 (93%) 8 (47%) 0 1 (7%) 2 (12%) 0 0

HHS 3 (18%) 4 (80%) 9 (64%) 12 (71%) 1 (20%) 5 (36%) 2 (12%) 0 0

CDC 4 (24%) 2 (40%) 9 (64%) 5 (29%) 2 (40%) 5 (36%) 8 (47%) 1 (20%) 0

CMS 0 2 (40%) 9 (64%) 11 (65%) 2 (40%) 5 (36%) 6 (35%) 1 (20%) 0

FDA 3 (18%) 1 (20%) 4 (29%) 10 (59%) 3 (60%) 8 (57%) 4 (24%) 1 (20%) 2 (14%)

Key: NIH = National Institutes of Health HHS = Department of Health and Human Services CDC = Centers for Disease Control and Prevention CMS = Centers for Medicare and Medicaid Services FDA = Food and Drug Administration AHRQ = Agency for Healthcare Research and Quality WH = White House VA = Department of Veterans Affairs DoD = Department of Defense HRSA = Health Resources and Services Administration Aging = Administration on Aging DoED = Department of Education DoL = Department of Labor DoJ = Department of Justice Toxic = Agency for Toxic Substances and Disease Registry SAMHSA = Substance Abuse and Mental Health Services Administration USDA = Department of Agriculture Kids = Administration for Children and Families Federal CTS = Federal Court System IHS = Indian Health Service Home Sec = Department of Homeland Security Interior = Department of the Interior

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Finding 6

A significant percentage of VHAs are currently considering or engaging in

federal policy initiatives on systemic health care issues.

Almost two-thirds of respondents said they are active or considering becoming active

on federal policy issues, such as general access to health care or overall disease

prevention. (See Figure 26) Slightly more than half are considering such activity at the

state level. (See Figure 27) While such issues are not disease specific, they do have a

direct impact on the constituencies served by these VHAs.

33

This could be a reflection of the increasing commitment among the Council’s member

VHAs to support the Council’s initiatives on such issues as NIH funding, increased

resources for the FDA, Medicare Part D, and preservation of Medicaid. It could also

reflect the recognition that the Council can help member VHAs pool their existing

resources, allowing them to enhance their effectiveness as a community on general

health issues.

At the same time, the CEOs interviewed clearly identified their top priorities for

advocacy work as issues specifically related to the disease or disability represented by

their organization.

The Asthma and Allergy Foundation focuses on access to care for people with

asthma, according to Executive Director Bill McLin. “We’re passive on other issues,

such as NIH funding, where we feel larger groups like the Council and

Research!America can carry the water,” he said.

CHADD’s key issues are the federal Individuals with Disabilities Education Act, parity

for mental health insurance coverage, continued CDC funding for CHADD’s national

resource center, and opposing legislation pushed by the Church of Scientology to

deny access to mental health services for children.

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For SBA, the key issues are NIH and the National Spina Bifida Program at CDC.

Finding 7

A majority of VHAs regularly participate in the NHC’s Government Relations

Affinity Group (GRAG) and find value in its work.

Some 64 percent of survey respondents regularly participate in GRAG’s monthly

meetings, as illustrated in Figure 28.

GRAG allows member VHAs to engage as a community on systemic issues, such as

NIH funding, Medicare, and Medicaid. For those with limited resources, the affinity

group provides their primary opportunity to be engaged on federal issues. Others

participate in order to expand the number of issues they can address. And for still

others, GRAG’s efforts supplement their organizations’ ongoing work on those issues.

In addition, GRAG provides a venue to identify other organizations for collaborative

opportunities, to learn about best practices in government relations, and to share

information.

35

Regular participants most often cited as valuable the opportunities GRAG offers to:

§ Expand the number of federal public policy issues in which the organization is

involved

§ Share information

§ Supplement the issues on which the organization is actively engaged

(See Figure 29)

36

However, the relative priority among those values shifts depending on the size of the

organization, with medium-sized VHAs differing from their large and small

counterparts.

• Large and small organizations find the opportunity to expand the

number of important issues addressed to be more valuable than do

medium-sized organizations. (See Figure 30)

37

• Medium-sized VHAs find information sharing more valuable than either

the large or small organizations. (See Figure 31)

• Medium-sized organizations find little value in GRAG participation as a

way to supplement their work on existing issues when compared to

large and small VHAs. (See Figure 32)

38

Interestingly, among the VHAs that do not regularly attend GRAG meetings, the

values shifted yet again. Information sharing was identified as the most valued

benefit, followed by supplementing work on existing issues. “Issue expansion” and

“best practices” were tied for third among this group. (See Figure 33)

Finding 8

VHAs need more information before they would be willing to consider

exploring the creation of a 501(c)(4) organization to expand the advocacy

activities of the VHA community under the umbrella of the National Health

Council.

In addition to candidate endorsements and contributions, 501(c)(4) organizations

have more freedom to communicate with the public about legislative issues and

political candidates’ positions on those issues during election cycles. For example,

such organizations are permitted to:

39

• Create and disseminate scorecards that cover a specific set of issues and

grade lawmakers.

• Create and disseminate voter’s guides that make clear where candidates

stand on specific public policy issues.

• Ask candidates to pledge their support for specific health policies and share

this information publicly.

• Make public statements about candidates and their positions.

• Engage in issue-based voter education.

• Increase time and money spent on direct lobbying activities.

Currently, the American Cancer Society (ACS) is the only member VHA with an active

501(c)(4) organization, the American Cancer Society Cancer Action Network (ACS

CAN). According to the survey, its most successful activities have been:

§ creating a voter’s guide

§ engaging in voter education

§ increasing the organization’s direct lobbying activities

ACS cited resolving legal difficulties and identifying resources as the primary

challenges in operating a 501(c)(4) organization.

Dan Smith, national vice president of federal and state government relations of ACS

and president of ACS CAN, believes that the Cancer Action Network will enhance

the society’s effectiveness. “All government relations activities will be incorporated

into this structure,” he said. “We will use it to raise advocacy-specific funding and to

get more involved in electoral activities. This is going to give us an opportunity to

hold candidates even more accountable and allow us to speak more sharply on

issues.” He noted, however, that the organization will not make campaign

contributions or endorse candidates.

Among survey respondents, 26 percent expressed no interest in exploring formation

of a 501(c)(4) organization. However, 20 percent expressed interest, and the majority

of survey respondents (54 percent) requested more information. (See Figure 34)

40

It will be important to clearly delineate the benefits and risks of establishing such an

organization, so that Council members can make an informed decision.

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Themes

Theme 1

There is no standard staffing model for VHA government relations programs.

The VHAs surveyed reported six different models for their government relations

programs, utilizing a mix of staff, consultants, and volunteers. These staffing models

have evolved slowly — in some cases over a period of many years. And, depending

on the organization, this evolution has been influenced by a number of factors,

including the need to leverage limited resources, a desire to focus on grassroots

advocacy, external forces, and the CEO’s personal philosophy.

Among the large VHAs, the Alzheimer’s Association grew its advocacy program slowly

over many years, moving from a contracted lobbyist to a current staff of 12 at the

national level. Staffing needs to be developed at the chapter level, according to CEO

Harry Johns. Some of the 78 chapters have dedicated in-house staff, while others use

contractors. He hopes to “build out” on the state level by capitalizing on the passion

of the organization’s constituents.

The American Cancer Society has devoted substantial resources to advocacy over the

years, but prior to 1999 the program lacked direction, said Dan Smith. Since then, he

has focused on learning the organization from the bottom up, building a staff and

volunteer infrastructure at the state level, and bringing in someone with specific

expertise in organizing a grassroots network.

Nine years ago, the ALS Association lacked a government relations infrastructure,

according to Steve Gibson, vice president, government relations and public affairs.

“The biggest obstacle was that it was never clear whether advocacy was really part of

the organization’s mission,” he said. One important way the association built support

was to get a bill introduced specifically addressing the needs of ALS patients and their

families. Today, the ALS Association has between five and seven staff positions in the

Washington, DC, office.

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At SBA, CEO Cindy Brownstein believes strongly that the CEO’s involvement is critical.

When she joined the organization in 2000, there was virtually no government

relations program. She opted to hire an outside firm and spend about 40 percent of

her time on advocacy. “As a medium-sized organization, hiring one GR person

would not have the same impact as hiring a firm and having the CEO serve as chief

advocate,” she said. “It’s surprising, but when you’re meeting with legislative aides,

they are flattered that the CEO is taking time out of a busy schedule. And it’s paid off

in real benefit to people with spina bifida.”

As CEO of a small VHA, Clarke Ross of CHADD has taken the organization’s GR

program from a focus on a single issue to what he called “a modest but more

comprehensive program” with four priority issues. One dedicated staff person has

primary responsibility for the program, with limited involvement by the CEO and the

addition of an outside consultant who focuses on a single issue. In 2004, Ross hired

a Deputy CEO for Public Policy and Community Services, but he acknowledged that

only 15 percent of that person’s time is devoted to advocacy at present.

AAFA Executive Director Bill McLin said, “As a small organization, we have to make a

lot of choices. We’re focused on themes revolving around access to care.” He

continued, “With one full-time staff, we have to be very selective. We don’t do much

‘boots on the ground’ on the Hill. We spend most of our time identifying the

important issues, studying them, and developing position papers, comments, and the

like.”

The National Psoriasis Foundation was founded 38 years ago. Initially focused on

advocacy, the organization then moved toward a mission focused on providing

information about the condition. Its government relations program began just two

years ago. The impetus came from the introduction of a number of new treatments

for psoriasis. Said Director of Advocacy Sheila Rittenberg, “Our volunteers started

clamoring for more action on psoriasis.” Government relations functions are handled

by a firm in Washington, DC, supplemented by quarterly visits from Rittenberg and

home district meetings with members of Congress in Portland, Oregon, where the

foundation is headquartered.

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Like most activities within the diverse VHA community, government relations

programs come in many shapes and sizes. While the “tools of the trade” may be

similar, each VHA will utilize them according to its unique character.

Theme 2

The growth and development of government relations programs often

depends on having champions who can sell the programs internally to both

staff and volunteers.

Many of the CEOs and senior government relations staff interviewed emphasized the

need to communicate the importance of advocacy to both the volunteer leadership

and staff.

ACS’s Dan Smith said, “I spent a good amount of time selling advocacy internally

throughout the organization — why we should do it, why we should invest in it. I’ve

done literally hundreds of internal advocacy presentations over the last few years.”

Steve Gibson agreed that internal politics is important. “We got our CEO involved

with all of our advocacy initiatives so he could see the needs first hand. We also got

more people internally involved in the advocacy process — helping to identify issues

by participating on conference calls and task teams and escorting volunteers when

they came to Washington.”

“I am a salesperson on the inside,” said Sheila Rittenberg. “We’ve spent a lot of time

integrating advocacy into everything we do,” she said, adding that the National

Psoriasis Foundation’s Medical Board and Board of Trustees provided a strong

impetus for greater emphasis on advocacy. And she noted, “We also have new

senior staff leadership in place. They have been agents for change.”

Among those interviewed, opinions varied about the volunteer commitment to

advocacy.

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Said Dan Smith: “The bottom line is that we’ve mainstreamed advocacy. It is no

longer a sideline business of the organization. We have fundamentally changed it

into a very important component of how we achieve our mission.”

Sheila Rittenberg noted that “the impetus to move toward a more aggressive

advocacy position was in part volunteer driven.”

At the Alzheimer’s Association, “there is a pretty strong consensus that it is

important,” said CEO Harry Johns. “Board volunteers have a sense of the potential,”

he said, adding that the commitment may be stronger than at some other VHAs

because Alzheimer’s research has been more under-funded.

SBA CEO Cindy Brownstein said her board members are eager to make

congressional visits — and do so regularly. “They love the impact they are making.

It’s a ‘rah-rah’ kind of day for everyone.” All of her board members know they can

pick up the phone any time they are going to be in Washington, and the office will

arrange a Hill visit, with Brownstein personally accompanying them if at all possible.

And they can see tangible results of their efforts in the growth of the CDC’s National

Spina Bifida Program.

Clarke Ross, CEO of CHADD, faces a different situation. “The board recognizes the

importance of advocacy, but it is not a priority interest of most of the board

leadership,” he said. “Public education and community support are more frequently

the driving motivations to become involved in CHADD.” The organization is having

its first-ever day on the Hill during the upcoming annual conference in Washington,

DC, and the pressure is on to make it a success. “We’re going to role model how

important and exciting this can be,” Ross said.

VHAs need to be mindful of the need to build and maintain support for their

government relations programs internally. Such efforts can pay off in terms of

securing increased resources to pursue their public policy agendas.

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Theme 3

Taking VHA government relations programs to the next level will require a

major investment in grassroots capacity building.

When asked to describe their vision for developing their government relations

programs, the CEOs interviewed for this study pointed to cultivating their grass roots.

That view was strongly seconded by the senior government relations staff interviewed.

SBA’s Cindy Brownstein believes utilizing the grass roots is the best way to advocate.

She envisions a three-pronged approach. First, the organization is activating its grass

roots — recruited primarily from the website at present — through quarterly e-mail

action alerts. Second, SBA is cultivating its “grass tops.” That means working to

identify parents of children and adults with spina bifida in key congressional districts

and asking them to send letters followed up by a phone call and thank-you note. The

third, as yet unrealized, step is to build chapter strength, possibly through grants for

state advocacy training for staff and volunteers, such as the program offered by the

National Health Council several years ago.

Clarke Ross has a similar vision for CHADD. Currently, grassroots advocacy efforts

rely on a database of 30,000, which recently generated 7,000 communications with

Congress on a key issue. CHADD is also working with chapter leaders and sister

organizations to hold receptions for state legislatures in three states where damaging

legislation has been proposed. His ultimate goal: a state organization with a paid

director in every state capital that is active with the state legislature, state media, and

national government and backed up by national staff in the field. To achieve that

vision, he hopes to hire field representatives to grow his 200 local support groups

and chapters into effective state-based organizations over time.

Bill McLin also wants more grassroots activity at the Asthma and Allergy Foundation.

He hopes to hire a second GR staff person to focus on state issues.

As noted earlier, the American Cancer Society’s Dan Smith hired a staff person with

extensive experience in grassroots organizing. “In addition to staff, I also realized

that we needed a volunteer infrastructure for our advocacy efforts,” he said. “Now we

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have a new level of organization and sophistication for advocacy. We have volunteers

managing other volunteers, with some staff involvement. Volunteers are given

guidance and structure, then they are given the responsibility of building teams in all

congressional districts.”

He added, “It’s important that we play a strong inside and outside game. Everyone

can have a strong inside game. Provided you have the money, you can hire an army

of lobbyists to represent you. The unique strength of ACS is that our power doesn’t

come from who we know but what our grassroots advocates demand of our elected

officials.”

Harry Johns, who was an executive at ACS before becoming CEO of the Alzheimer’s

Association, shares that sentiment. “The passion is incredible when you talk to people

who have been touched by the disease. There is a huge pool of people to be

mobilized and huge potential.” He added, “There’s no doubt that over time we have

got to build out on the state level. That’s really where that kind of grassroots activity

takes hold. You’ve got to have people on the ground.”

In noting the importance of passion, Sheila Rittenberg of the National Psoriasis

Foundation said, “In my experience, most Washington representatives for health care

groups are so ensconced in the ‘DC scene’ that they are disconnected from the

passion of the grass roots and the volunteers they represent.”

Steve Gibson, VP of government relations and public affairs at the ALS Association,

agrees. “We have tried to simplify things by deemphasizing the ‘politics,’” he said.

“Many groups try to train their advocates and turn them into ‘mini-lobbyists.’ We’ve

found that advocates can be far more effective if they simply tell their stories.”

Clearly, grassroots capacity building is seen as the key to the future growth and

effectiveness of VHA government relations programs.

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Conclusions The government relations programs of the voluntary health agencies that belong to

the National Health Council are in many ways as unique as the organizations

themselves. However, certain conclusions can be drawn from this benchmarking

study.

First, all of the programs, whether in existence for years or begun only recently, are

growing. What’s more, the CEOs and senior government relations staff are

determined to grow them more, being convinced of the importance of advocacy in

fulfilling the overall mission of the organizations.

Second, the engine that will drive this expansion is located at the grass roots.

Harnessing the passion and power of constituents directly affected by chronic disease

and disability is seen as the best way to increase the impact of the organization at

both the federal and state levels.

Third, with the exception of the largest groups, VHAs are just beginning to focus on

advocacy at the state level. Yet most are eager to “build out” and can identify many

issues important to their constituents that require work on the state level.

Finally, virtually all of the VHAs, survey respondents and interviewees alike, recognize

the challenges of taking their advocacy programs to the next level. These include

competition for scarce organizational resources, educating and motivating staff and

volunteers at all levels, and building infrastructure and capacity at both the national

and state levels.

In this regard, the National Health Council and its Government Relations Affinity

Group can play an important role in helping the VHA community capitalize on

opportunities for capacity building, particularly at the grassroots level. The Council

also has a role to play in looking for innovative ways to increase the community’s

impact in the public policy arena.

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