Comment from Bailey, Isabel, Boston Childrens Hospital

April 5, 2013 To the Social Security reviewers I am writing to voice how concerned I am about the proposal for revised medical criteria for evaluating respiratory system disorders, specifically the criteria that affect children and adults with cystic fibrosis sections 3.04 and 103.04 of the proposed rule, “Revising Medical Criteria for Evaluating Respiratory System Disorders.” I am a social worker in the Adult Boston Childrens Hospital/Brigham and Woman’s Hospital Cystic Fibrosis Care Center. I have known 250 patients who live with this chronic illness and witnessing medical advancements that have improved the lives of our patients, but I have also seen some of these advancements increase their treatment burden, adding time and energy to an already rigorous daily medical regimen. It is estimated to be 3-4 hours per day. They do airway clearance, inhaled medications, pills. When patients experience a respiratory exacerbation of their illness, the physician often tries to treat them with oral, inhaled, or sometimes home intravenous antibiotics so that patients can maintain some semblance of normalcy during treatment. Most of the medical care is being done at home to reduce the exposure to infection. . During an exacerbation, their airway clearance is increased to four times each day and there might be nebulized antibiotics the patients need to administer 2-3 times each day, or intravenous antibiotics up to 3-4 times per day. This has reduced cost! An in-patient stay for 10 days of IV antibiotics is about $300,000. A home IV course is about $30,000. It is my understanding that the change will return patient to hospitalizations for treatment of these exacerbations because a patient would only meet the proposed disability guidelines that way. Our physicians strive to keep our patients out of the hospital whenever possible to improve quality of life but to also keep healthcare costs low. I feel that you are doing these patients a tremendous disservice b