September 28, 2010
Centers for Medicare & Medicaid Services
Department of Health and Human Services
Room 445-G
Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201
RE: Comments on Interim Final Rule on Pre-Existing Condition Insurance Plan
Program
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 rule on the pre-existing condition insurance plan (PCIP) program. The PCIP
program will give many myeloma patients who have been denied insurance coverage
because of their pre-existing condition access to health insurance. The IMF commends
your efforts to put together this interim final rule; however, we remain concerned about
certain portions of the rule, which could harm myeloma patients.
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 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.
Benefits in the PCIP Program
We applaud the Department for setting the premiums for the PCIP program at 100
percent of the standard insurance rate. Existing premiums in the States that currently
offer insurance for high risk pools varies between 105 ­ 250 percent of the standard rate.
Unfortunately many patients in these State high risk pools are unable to afford the
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premiums and we commend the Department for taking this into consideration during the
drafting of the interim final rule. Additionally, we commend the Department for limiting
out-of-pocket costs for PCIP enrollees.
However, we remain concerned about two key issues in the benefits section of the PCIP
program. First, the IMF is concerned about the ability of patients with myeloma to
access to in-network providers that specialize in management of this disease. The
number of myeloma specialists in the United States is limited and we are concerned that
PCIP enrollees will not have access to them because these specialists may not be included
in-network. Secondly, we are concerned that coverage of out-of-pocket costs for PCIP
enrollees is limited to in-network providers only. Under this scenario, a myeloma patient
may have to forgo treatment as a consequence of the in-network provider limitation and
unlimited out-of-pocket costs necessary to see an out-of-network provider. We hope the
Department will take these concerns into consideration as you finalize these rules.
Oversight in the PCIP Program
We applaud the Department for addressing the issue of insurer dumping. IMF hopes that
the ability of the Secretary to bill an insurer or group health plan for any medical
expenses incurred by the PCIP program for such enrollees, as well as the potential for
other actions by the appropriate Federal and State authorities as a consequence of such
practices, will be enough to deter insurer dumping.
Funding for the PCIP Program
The IMF recognizes that the PCIP program is a temporary insurance program for patients
with pre-existing conditions; however, the IMF is concerned that the Department views
the adjustment of premiums, altering required benefits, and limiting PCIP applications as
mechanisms to deal with insufficient funding for the PCIP program. IMF requests that
the Department not increase premiums or reduce benefits before clearly demonstrating
that funding for the PCIP program is in jeopardy. Further, we request that the interim
final rule clarify that any changes to the premiums and benefits of the program may not
exceed the boundaries of the law. This would ensure that decreases in benefits, increases
in co-pays, etc. cannot lower the actuarial value of the plan below 60% and the premiums
may not increase above the standard rate. Should such changes be allowed, we suggest
that all PCIP enrollees be notified of these changes at least 60 days prior to their
enactment. Additionally, we recommend that the Department also encourage other cost
containment methods, such as case management, before allowing changes to premiums
and benefits. Finally, we request that the PCIP program be given the authority to seek
additional funding from other sources, include state legislatures.
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800-452-CURE (2873)
818-487-7455 telephone 818-487-7454 fax
www.myeloma.org
Transition to the Health Exchanges
The IMF requests that the Department ensures that there are no lapses in coverage for
individuals enrolled in the PCIP program when the Department develops procedures to
transition PCIP enrollees to the Health Exchanges. The IMF would like to propose that
the Department put together an aggressive and targeted public awareness and educational
campaign which would provide PCIP enrollees with detailed information about this
transition. We also strongly advise the Department to provide information to enrollees in
a wide range of formats. IMF stands ready to work with you as you develop these
procedures.
We applaud the Department for its 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