Increase Federal PKD Research Funding
Current Status
In January and March 2008, the PKD Foundation formally asked Congress to invest more money at the NIH and to include a reference to PKD in the Fiscal Year 2009 Labor-Health-Education “report language” (explained in the “Additional Background” section below).
The NIH invested around $36 million in PKD research in FY 2007, the latest figures available. The NIH estimates it will “flat fund” PKD research in FY 2009 and 2010 at about the same, or slightly lower, level.
Why Increased PKD Funding is Important
In 2003, the NIH invested a record $37.3 million in PKD research. By 2005, that funding level had declined almost 32 percent before rebounding to the current funding level of $36 million for 2007. Without reasonable increases in funding, inflation and other increasing costs of conducting basic, clinical and translation research will threaten the significant progress currently underway in the PKD field.
Funding for PKD research has decreased despite the fact that PKD costs the federal government more than $2 billion per year to pay for dialysis, transplantation and related treatments caused by the disease and paid through Medicare and Medicaid. PKD is the number one genetic cause of End Stage Renal Disease (ESRD or kidney failure) in the United States and the fourth leading cause, overall.
Despite the challenges, PKD research offers a tremendous “return on investment” for the amount of federal funding the NIH devotes to it. Dr. Francis Collins, former director of the Human Genome Research Institute, has called PKD one of the “hottest, most promising areas of research in all of bio-chemistry.” Scientists discovered the genes that cause PKD just 13 years ago. Now, there are 17 clinical trials and counting underway to find a treatment.
While PKD, the world’s most prevalent, life-threatening genetic disease, affects more than 600,000 Americans, other less prevalent genetic diseases receive more federal research funding per person.
|
Disease
|
U.S. Prevalence
|
Funding Level (per person)
|
|
Huntington's Disease
Muscular Dystrophy
Cystic Fibrosis
Sickle Cell Anemia
Down Syndrome
PKD
|
25,000
25,000
30,000
100,000
250,000
600,000
|
$2,120
$1,880
$2,733
$940
$64
$60
|
Source: NIH, Estimates of Funding for Various Diseases, Conditions, Research Areas, February 2008.
Additional Background
Increasing federal funding for PKD research can be accomplished in two ways. First, Congress must commit to increasing the overall budget of the NIH to allow the agency to fund more disease research, especially for areas like PKD that show tremendous potential for a treatment or cure. PKD is not well funded when compared to other common genetic diseases that affect far fewer individuals and have much less scientific momentum behind them, as indicated by the table above.
The NIH’s almost $276 million investment in PKD research since 1993 represents verifiable progress to Congress and the public that their investment is producing a direct benefit for PKD patients. Research is helping to generate promising therapeutic opportunities that will save billions in health care costs, as well as free up several thousand spots on the kidney transplant waiting list.
Secondly, Congress should continue to reference PKD in the “report language” of the FY 2009 Labor-Health-Education Appropriations Committee Reports. PKD has been listed in these reports for the past several years, which highlight areas where the NIH should focus its attention and resources. New for 2009, the proposed PKD report language asks the NIH to establish a national network of PKD diagnostic and treatment centers that would substantially advance PKD research, alleviate patient suffering and extend patient lives.
Download Documents
Proposed PKD Report Language for FY 2009 (PDF)
History of Federal PKD Research Funding (PDF)
PKD Funding vs. Funding for Other Common Genetic Diseases (PDF)
PKD Prevalence Rate by State (PDF)