CLC Comments on Patientsí Bill of Rights Protections in ACA
(August 27, 2010)

August 27, 2010

Office of Health Plan Standards and Compliance Assistance
Employee Benefits Security Administration
Room N-5653
United States Department of Labor
200 Constitution Avenue, NW
Washington, DC  20210



The undersigned organizations, which represent cancer patients, providers, and researchers, commend the Departments of Health and Human Services, Labor, and Treasury for the interim final rules regarding preexisting condition limits, rescissions, annual and lifetime limits, and patient protections.  These rules, as the departments acknowledge, are of special benefit to those who have been diagnosed with illness, injury, or disability.  These individuals need adequate insurance coverage so that they can obtain timely and appropriate access to care of high quality, and the interim final rules will help them obtain such coverage and care.

Cancer survivors, who have frequently been targets for rescissions of coverage, meet annual and lifetime limits at a disproportionate rate compared to other insured individuals, and experience significant obstacles to obtaining insurance after their initial cancer diagnosis, may benefit significantly from these rules.   

Our recommendation related to the interim final rules is technically outside the scope of the rules but is essential to realizing their potential benefits.  We propose an aggressive and targeted public awareness and educational campaign that would provide consumers with detailed information about the protections that are included in the rules.  In the preamble to the rules, the departments describe strategies that will assist consumers in optimizing the rules and their protections.  For example, the regulations include advice to consumers to avoid the possibility of rescission and also alert individuals under age 19 to strategies to capitalize on the preexisting condition protections that will go into effect in advance of 2014.  By offering this advice, the departments provide valuable information to consumers but also impliedly acknowledge the complexity of the rules.  The information in the preamble to the regulations and additional guidance about the rules and their effects should be made available to consumers in a wide range of formats.

Because those who will benefit from the rules are individuals who have already been diagnosed with an illness or disability, there is great promise in partnering with the patient advocacy and consumer organizations representing these individuals to undertake specially designed educational efforts that could be effectively disseminated to the likely beneficiaries of the rule. There are many valuable and efficient strategies for communicating with these special populations so that they are aware of provisions of the Affordable Care Act, as implemented by these rules, which might improve their access to insurance and health care.  

We appreciate the opportunity to comment on the interim final rules, which represent an appropriate balance of the needs of those with serious illnesses for access to high quality care and the necessity to restrain premiums for all who are currently insured.



American Society for Radiation Oncology
Bladder Cancer Advocacy Network
C3: Colorectal Cancer Coalition
Cancer Support Community
The Children's Cause for Cancer Advocacy
Coalition of Cancer Cooperative Groups
International Myeloma Foundation
The Leukemia & Lymphoma Society
Lymphoma Research Foundation
Multiple Myeloma Research Foundation
National Coalition for Cancer Survivorship
National Lung Cancer Partnership
National Patient Advocate Foundation
Ovarian Cancer National Alliance
Pancreatic Cancer Action Network
Prevent Cancer Foundation
Sarcoma Foundation of America
Susan G. Komen for the Cure Advocacy Alliance
Us TOO International Prostate Cancer Education and Support Network