Call to Action

A Call to Action– INCREASE PKD AWARENESS & RESEARCH

It may surprise you to know that a majority of Americans have never heard of polycystic kidney disease. When PKD of VA Foundation President Kathleen Kenworthy recently spoke to the Health, Welfare and Institutions Committee of the Virginia General Assembly, many members expressed dismay that they were unaware of a disease affecting so many Virginians.

It is a fact that PKD research on both state and federal levels remains grossly under-funded compared to other less prevalent diseases. The National PKD Foundation notes “that strong report language and directions by the U.S. Congress are sometimes disregarded by institute directors at the National Institutes of Health (NIH) in favor of bureaucratic foot-dragging”.

For example, the NIH spends more than twice as much money on Lyme disease as it does for PKD even though Lyme disease is 45 times less prevalent than PKD and can readily be treated. Another example is cystic fibrosis, which annually receives more than $62 million in federal research funds while PKD affects 20 times more Americans than cystic fibrosis – that’s 700 percent less federal research funds from NIH. [source: National PKD Foundation] [see: statistics]

What can you do?

The best advocates are our members and friends just like you. If your elected representatives can be persuaded to talk about PKD to their friends on important committees (like the Appropriations Committee), it will make a tremendous difference.

Stay informed of issues that arise in the PKD community by visiting this website often.

Develop a relationship with elected representatives in the U.S. Congress and the VA General Assembly to keep them informed of important issues affecting the PKD community – and ask them to follow-up on issues such as funding for PKD research at the National Institutes of Health.

Participate in lobbying efforts which take place in Washington, DC and at the VA General Assembly. There is strength in numbers.

What is the National Institutes of Health (NIH)?

One important, on-going issue concerns federal funding of PKD research through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH).

The National Institutes of Health (NIH) mission is to uncover new knowledge that will lead to better health for everyone. NIH works toward that mission by:

Conducting research in its own laboratories;

Supporting the research of non-Federal scientists in universities, medical schools, hospitals, and research institutions throughout the country and abroad;

Helping in the training of research investigators;

Fostering communication of biomedical information.

The NIH is one of eight health agencies of the Public Health Service which, in turn, is part of the U.S. Department of Health and Human Services.

What is the goal of NIH research?

Simply described, the goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold. A principal concern of the NIH is to invest wisely, the tax dollars entrusted to it for the support and conduct of biomedical research. More than 81 percent of the investment is made through grants and contracts supporting research and training in more than 1,700 research institutions throughout the U.S. and abroad. In fact, NIH grantees are located in every State in the country. These grants and contracts comprise the NIH Extramural Research Program.

Approximately 11 percent of the budget goes to NIH’s Intramural Research Programs, the more than 2,000 projects conducted mainly in its own laboratories. About 8 percent of the budget is for both intramural and extramural research support costs.

How does NIH fund research?

Final decisions about funding extramural research are made at the NIH headquarters. But long before this happens, the process begins with an idea that an individual scientist describes in a written application for a research grant. The project might be small, or it might involve millions of dollars. The project might become useful immediately as a diagnostic test or new treatment, or it might involve studies of basic biological processes whose practical value may not be apparent for many years.

How does grass-roots lobbying of Congress affect research funding at the NIH?

The House and Senate Appropriations Committees are responsible for preparing legislation to pay for all aspects of the federal government, through the appropriations process using our tax dollars. Both the House and Senate Appropriations Committees have a Subcommittee on Labor, Health and Human Services, and Education. This subcommittee is responsible for funding the budget of the National Institutes of Health. By stressing the importance of increasing PKD research with members of this subcommittee and members of the full Appropriations Committee, strong language has been included in their reports stressing the importance of “Re-doubling the efforts of NIH to find a treatment and a cure for PKD.”

How have grass-roots lobbying efforts by the National PKD Foundation helped federal funding of PKD Research?

When the National PKD Foundation was established in 1982, the National Institutes of Health (NIH) was not allocating any money for PKD research. When the National PKD Foundation began to aggressively lobby for PKD research funding about seven years ago, the NIH funded just over $1 million. Because of the Foundation’s role in obtaining increased allocations for PKD research, in 1997 the NIH had a PKD research portfolio which exceeded $7 million. An additional $2.5 million PKD Program Announcement, and a PKD Scientific Meeting co-sponsored by the PKR Foundation and the NIDDK (National Institute of Diabetes and Digestive and Kidney Diseases), were exciting events which occurred late in 1997. During 1998, the National PKD Foundation successfully petitioned Congress to direct the National Institutes of Health to “establish four PKD research centers at $1 million each” in its 1999 budget.

Efforts by the National PKD Foundation are on-going and often fruitful. If you would like to be part of these efforts, visit the Action Alert center on the National PKD Foundation website.