August 27, 2010
Office of Health Plan Standards and Compliance Assistance
Employee Benefits Security Administration
Room N-5653
U.S. Department of Labor
200 Constitution Avenue, NW
Washington, DC 20210
Attention: RIN 1210-AB43
Office of Consumer Information and Insurance Oversight
Department of Health and Human Services
Attention: OCIIO-9994-IFC
P.O. Box 8016
Baltimore, MD 21244-1850
Internal Revenue Service
CC:PA:LPD:PR (REG-120399-10)
Room 5205
P.O. Box 7604
Ben Franklin Station
Washington, DC 20004
RE: Draft comments on interim final rules on preexisting condition protections, rescissions,
annual limits, and patient protections
To Whom It May Concern:
On behalf of the International Myeloma Foundation (IMF), the oldest and largest myeloma
foundation dedicated to improving the quality of life of myeloma patients while working toward
prevention and a cure, I am writing to submit comments on the interim final rules on preexisting
condition protections, rescissions, annual limits, and patient protections. The IMF commends the
Departments of Health and Human Services, Labor, and Treasury for the interim final rules as
myeloma patients need adequate insurance coverage so that they can obtain timely and
appropriate access to quality cancer care.
Myeloma is a cancer in the bone marrow affecting production of red cells, white cells, and stem
cells. It is also called "multiple myeloma" because multiple areas of bone marrow may be
involved. Myeloma is the second most common blood cancer after lymphomas. Each year,
approximately 20,000 Americans are diagnosed with myeloma and 10,000 lose their battle with
this disease. At any one time there are over 100,000 myeloma patients undergoing treatment for
their disease in the U.S. Although incidence of many of cancers are decreasing, myeloma cases
are increasing in incidence. Once a disease of the elderly, it is now being found in increasing
numbers in people under 65 and it is not uncommon to find patients in their thirties. Even while
they live with the disease, myeloma patients can suffer debilitating fractures and other bone
12650 Riverside Drive Suite 206, North Hollywood, CA 91607
800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org
disorders, severe side effects of their treatment, and other problems that profoundly affect their
quality of life, and significantly impact the cost of their health care.
According to a National Survey of Households Affected by Cancer conducted USA Today; the
Kaiser Family Foundation; and the Harvard School of Public Health; one in ten reached the limit
of what their insurance would pay for cancer treatment; and one in twelve were turned away or
unable to get a specific type of treatment because of insurance issues. Additionally, cancer can
also be an issue that makes it difficult for people to get and keep insurance. This survey also
found that one in ten say they were unable to buy health insurance because of having cancer, and
6% say they lost their health insurance as a result of having cancer.
These interim rules will go a long way, when fully implemented in 2014, to help myeloma
patients obtain high quality cancer care without fear of forgoing treatment due to reaching
coverage limits or worse losing or being unable to obtain insurance coverage entirely. We do,
however, remain concerned that many myeloma patients could potentially forgo or postpone
treatment due to reaching the annual limit of what their insurance covers prior to 2014.
Additionally, IMF would like to propose that the agencies put together an aggressive and targeted
public awareness and educational campaign which would provide consumers with detailed
information about the protections that are included in the final rules. IMF has received many
questions and requests for more information about the specific provisions related to health care
reform. Due to the complexity of health reform and confusion of the general public about
provisions in the new law, we remain concerned that myeloma patients will not know how these
final rules could benefit them. We strongly advise the agencies to provide information to
consumers in a wide range of formats. IMF stands ready to work with you to promote awareness
of these important provisions, which will improve access to insurance and health care.
We applaud your efforts and thank you for the opportunity to provide comments. Please do not
hesitate to contact us should you have any questions or need more information.
Sincerely,
David Girard
Executive Director
12650 Riverside Drive Suite 206, North Hollywood, CA 91607
800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org