Careful planning, networking, and funding can improve public-health
services for people with mental illness and other diseases, despite widely
varying political circumstances in each state.
Why are consumer health advocates more successful at improving access to
medical care in some states than they are in others?
That simple question was among the driving factors behind a
first-of-its-kind study that looked at what factors affect the amount of
funding that states commit to expanding or at least maintaining access of
their residents to health care. The study's authors said it is an increasingly
important question as states take on a growing share of the health care
A report titled “Consumer Health Advocacy: A View From 16
States,” released last month by Community Catalyst Inc., a
health-advocacy group based in Boston, concluded that the success of
state-based consumer health groups largely depends on a combination of how
organized the groups are, how much funding they have, and their state's
“Consumer advocacy has had a significant impact, both in promoting
innovative new health policies and in defending against proposed cutbacks in
health coverage and access,” according to the report.
The report was based on more than 200 interviews with advocates and
policy-makers in 16 states, as well as reviews of research and health care
Advocates said the report comes at a crucial time as significant aspects of
public health policy decision making have shifted from the federal government
to the states. In recent years states have taken the lead in tightening
Medicaid eligibility and benefits, providing children's health insurance and
hospital care for the indigent, and addressing other public-health access
Additionally, the issue of publicly funded health coverage has become
increasingly important, the advocates said, as the number of uninsured
Americans rose to 46.6 million in 2005, an increase of 1.3 million people over
2004, according to U.S. Census Bureau statistics. Those changes come as
efforts to expand health care coverage at the federal level have been stymied
by financial constraints.
“Taken together, these realities have prompted a focus on states as
the place where health policy is most likely to be made,” wrote the
Successful efforts to expand public access to health care at the state
level are already under way. Recent passage of major public health care
coverage expansions in Massachusetts, Colorado, and Illinois were signs that
significant policy change is still possible when consumer advocates are
actively involved. Health care advocates are also critical to preventing the
loss of access to health coverage in states looking for financial savings, as
evidenced by recent successful efforts to preserve public health benefits that
had been under threat in Mississippi and Ohio.
The report determined that the success of local advocates in raising their
own consistent funds is a crucial factor in the scope and success of consumer
advocacy efforts in a given state.
“We can give state groups money for specific campaigns, but
sustainability after that little bit of money is gone is very
important,” Laura Galbreath, director of health care reform at the
National Mental Health Association,told Psychiatric News.
The report found that states with “sophisticated advocacy
capacity,” such as Illinois and Massachusetts, expanded health coverage
for hundreds of thousands of people in recent years. In Illinois, the report
authors credited consumer health advocates with enabling 280,000 uninsured
adults to obtain Medicaid coverage by getting the state to change eligibility
limits. A three-year campaign by consumer health advocates in Massachusetts
won affordable health coverage plans for 350,000 low- to middle-income
The study found that more people in southeastern states suffer
disproportionately with health care access problems than those in other
regions. These problems are largely the result of depressed economies, low
rates of employer-sponsored health insurance, and strong political opposition
to health policies that benefit the uninsured and underinsured, according to
the report's authors.
When well organized, however, advocates have improved public health care
access even in these states. In Mississippi, advocates mounted a successful
campaign to stop an effort that would have terminated the Medicaid coverage of
65,000 low-income seniors and disabled individuals. The public pressure
generated by advocates across the state led to a delay in the termination
until most of the recipients were eligible for Medicare prescription drug
The report found that many of the 16 states had well-organized mental
health advocacy groups, but, like other state health groups, many are wholly
volunteer efforts with minimal budgets or are dependent on staffing and other
resources contributed by large organizations or agencies.
Better organization also would benefit other, wealthier states where better
public health services might be expected, such as Maryland, but that have“
piecemeal and uncoordinated” public mental health services,
according to advocates interviewed in the report. The report cited Maryland's
1996 Medicaid waiver that allowed it to shift those beneficiaries into managed
care, but did not include mental health services.
To develop strong and organized “systems of consumer advocacy”
in all 50 states and ultimately to influence national health care debates, the
report made four recommendations: build advocacy systems in each state based
on an assessment of local needs, develop a national program to coordinate
state efforts and deliver strategic support, organize issue campaigns within
and across states to build momentum for reform, and develop a stronger
resource base to support that advocacy.
“With more Americans losing or at risk of losing health security
every day, creating strong consumer organizations on the ground level in each
state would change the whole tenor and outcome of the health care
debate,” said Rob Restuccia, executive director of Community
“Consumer Health Advocacy: A View From 16 States” is