Advocacy

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One of the areas of increased focus for our organization is advocacy. We are working hard to support and promote the rights of patients, advocate for positive changes in the health care system, and enhance health policy initiatives related to patient care.  Specifically,  we are advocating for policies that promote early detection, easy access to treatment, and a focus on ongoing wellness for patients.

This past year we have fought to increase or prevent cuts to funding for programs for hemochromatosis research (Letter to Sam Johnson ‐ R Texas).  We have advocated to protect individuals against genetic discrimination and to promote services for those suffering from this disorder.  We championed health care reform (Petition). We continue to work with other health advocacy organizations to influence critical national policy debates.

We are currently looking into several issues that may effect patients with hemochromatosis.  One issue concerns proposed changes by the Federal Drug Administration (FDA) regarding the use of in vitro diagnostic products labeled for research use only (RUO) or investigational use only (IUO).  The change would mean that products labeled RUO or IUO would not be allowed for use in clinical diagnosis or patient management. HIS is inquiring if this would have an impact on the various types of genetic screening that is used to diagnosis hereditary hemochromatosis.  In addition, in a letter from the American Hospital Association (AHA) to the FDA, the AHA warns that this change could impact the ability of hospitals to “identify compatible donors for transplant patients.” This would have a potential impact on hemochromatosis patients who may need organ transplants due to damage caused by excess iron. HIS is investigating the impact of the proposed changes and will decide shorty whether or not to send a letter to the FDA outlining our position.

Another issue concerns funding levels for the National Institutes of Health and the CDC.  These agencies may be subject to funding cuts based on political and fiscal issues in Washington, D.C. HIS will continue to reach out to members of the House of Representatives and the Senate to ensure that they are aware that we support full funding for these agencies so that they can continue to provide support to people with hemochromatosis.

HIS will continue to focus on issues that effect those suffering from hemochromatosis and to influence health policy at all levels.

 

 


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