My family suffers from psoriasis, psoriatic arthritis, insulin dependent diabetes, Sjogren's syndrome and thyroid issues, ALL of them are autoimmune diseases. My family is part of the millions of Americans who suffer from one or more autoimmune diseases. I am writing to express my concern about the proposed Essential Health Benefits (EHB) rule which will soon define the standard of care for millions of Americans including families like mine.
I believe that the proposed rule does not adequately address the complexities which confront people who live with diseases like mine. Our conditions are often extremely difficult to diagnose, require extensive testing, and necessitate ready access to providers who have special expertise. Moreover, many of us must rely upon a variety of medicines to combat our illness or ameliorate its symptoms. Consequently, access to specialist, specialized care, and specific medicines can be a matter of life and death.
The proposed rule does not provide us with adequate protection.
We ask you to recognize the critical need we have for access to treatment by specialists by explicitly stating that in the rule.
We ask you to recognize the fact that our health – even our lives – depend upon being able to access to specific medicines because of the esoteric nature of our illnesses and the potential for negative drug interaction.
We ask you to provide us with more precise definitions of medical necessity and rights of appeal.
We respectfully point out that appropriate treatment for us generates huge saving both in terms of human suffering and by preventing the need for costly critical care which inevitably results from inadequate access to needed services and medicines.
~An autoimmune family.
Patricia Barber
This is comment on Proposed Rule
Patient Protection and Affordable Care Act: Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation
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