The Importance of Creating a Texas Rare Disease Advisory Council (RDAC)
Paving the way to better healthcare policy for Texas and those living with rare diseases. The Texas Bleeding Disorders Coalition is dedicated to improving public policy and ensuring access to treatment for people with rare or "orphan" diseases and the communities that support them.
All forms of pediatric cancer are considered rare, as are brain, pancreatic, ovarian, thyroid, and stomach cancers. Otherexamples of rare diseases include blood disorders, sickle cell disease, eye diseases, and autoimmune disorders. For patientssuffering from these and numerous other rare conditions, it can take several years to receive an accurate diagnosis andeffective treatment. Only a handful of rare diseases are well-understood and most do not receive adequate researchfunding.
A rare disease is a disease or condition that affects fewer than 200,000 individuals living in the United States.
There are 7,000 known rare diseases impacting the lives of 1 in 10, or approximately 30 million Americans. A majority of those with a rare disease are children.
While 90% of rare diseases do not have treatment options, for those that do, the cost of rare condition medications has risen 54% in the last 4 years.
With diverse membership and broad community support, RDACs can be a valuable resource for state governments as our healthcare system continues to advance.
With strong RDACs, government officials and the rare disease community can partner together to develop the resources necessary to prevent and address barriers in a strategic way that allows states and their citizens to thrive.
In the U.S., only a few rare diseases are tracked after diagnosis - because most are not tracked, the exact number or how many people affected is difficult to determine.
Rare Disease Advisory Councils (RDACs)demonstrate enormous promise to address these barriers for the rare disease community.
Without RDACs in place, state laws and regulations that affect the rare community will continue to be developed without the consultation of rare disease stakeholders, often leaving this vulnerable population at greater risk for poor health and economic outcomes.
The creation of a Texas Rare Disease Advisory Council will provide a unified voice for rare disease patients, and a forum to make recommendations to elected officials and other state leaders about pressing healthcare issues. Composed of qualiifed professionals and persons living with rare diseases, the Council could also educate medical professionals, government agencies, legislators, and the public, about rare diseases as an important public health issue. From providing information on the provider-patient relationship, to identifying best practices throughout the nation, the Council will coordinate with lawmakers to improve public policy. Varied stakeholders, patients, doctors, hospitals, patient-based organizations, health officials, and researchers- are all represented on a Council. It will serve as an educational resource about the ways in which rare disease patients interact with our health care system.