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Statement by Assistant Secretary of Health puts focus on patient suffering and poor quality of life

Members of the CFSAC committee were introduced to Dr. Howard Koh, the Assistant Secretary for Health for the U.S. Department of Health and Human Services, who was appointed to this position by President Obama in 2009. Dr. Koh oversees numerous public health offices and serves as senior health advisor to the Secretary of Health, Kathleen Sebelius. Dr. Koh welcomed the committee and issued a statement that summed up his understanding of the major CFS/ME issues and challenges and the means by which they can be confronted.

In his presentation, Dr. Koh:

• Stated that while he serves in this position, as Assistant Secretary for Health, he will remain committed to working with the CFSAC committee

• Commended the work of the CFSAC: its recommendations and accomplishments over recent years

• Stated that he will strive to bring a unified approach to ME/CFS, its etiology, treatment and quality of life for patients with ME/CFS

• Indicated that he had recently met with the Secretary of Health and reviewed the status of CFSAC recommendations over recent years

• Indicated that Secretary of Health Sebelius appeared to be very interested and supportive

• Remarked that he is grateful to Dr. Francis Collins (at the NIH). Dr. Koh's expectations of Dr. Collin's involvement in CFS/ME are very positive, particularly in view of his scientific background and commitment.

• Acknowledged how many doctors have never heard of ME/CFS

• Acknowledged the level of disability caused by this illness and how it impacts quality of life

• Advised patients to be sure to check out the Affordable Care Act and Pre-existing Condition Insurance Plan (PCIP) which are part of the new health law. Links to these laws and programs are included at the end of this article.

• Recognized the importance of provider education and the need to update the current provider information (i.e., like the information provided by CDC)

• Expressed concern and sincere interest to put an end to the type of patient hardships (i.e., patients not able to find knowledgeable doctors) that were heard during public testimonies

• Made a pledge that he wants to be at all future CFSAC meetings, while he is the Assistant Secretary of Health, and work closely with this committee

Dr. Koh concluded that the best strategy would be to go after the best science and best scientific leads available at this time. He recommended waiting for the results of the two studies currently funded by the NIH (due to come in around the end of the year). Meanwhile, he felt there were several things that could be addressed in the near future (as mentioned above) which could help to alleviate the suffering and hardships endured by patients.