February 21, 2013
The Honorable Kathleen
Sebelius
Department of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
Re: CMS-2334-P, Proposed Rule on Medicaid, Children's Health Insurance Programs, and Exchanges: Essential Health Benefits in Alternative Benefit Plans, Eligibility Notices, Fair Hearing and Appeal Processes for Medicaid and Exchange Eligibility Appeals and Other Provisions Related to Eligibility and Enrollment for Exchanges, Medicaid and CHIP, and Medicaid Premiums and Cost Sharing
Dear Secretary Sebelius:
The undersigned organizations, representing cancer patients,
physicians, and researchers, appreciate the opportunity to comment
on the proposed rule on Medicaid, Children’s Health Insurance
Programs, and Exchanges. Our organizations are
committed to the implementation of the Affordable Care Act in a
manner that permits informed consumer decision-making with regard
to insurance options and also encourages the delivery of quality
care. We appreciate the considerable challenge that the
Centers for Medicare & Medicaid Services (CMS) faces in
implementing new health insurance options in a way that balances
cost and access. In the agency’s decisions to grant states
considerable flexibility in imposing cost-sharing requirements for
the expanded Medicaid program, it has tilted toward cost
containment in a way that puts cancer patient access to care at
risk. Our comments address that issue and additional
concerns of cancer patients and physicians.
Cost-Sharing Requirements
The expanded Medicaid program holds great promise for providing
cancer survivors access to care that many have not received at all
and others have received too late. We anticipate that many
who are living with cancer as a chronic disease and who may have
suffered interruptions in employment may find Medicaid to be a
life-saving insurance option. These individuals may need
complex multi-disciplinary care for the management of their cancer
and the late and long-term effects of cancer and its
treatment.
The cost-sharing flexibility that CMS has provided the states may
undermine the effectiveness of the Medicaid expansion as a viable
option for those with cancer by increasing cost-sharing
responsibilities and putting quality care out of the reach of
enrollees. The proposed rule would permit states to boost
cost-sharing for non-preferred drugs to $8 for those with family
income at or below 150 percent of poverty and 20 percent of the
cost the agency pays for non-preferred drugs for those with
incomes above 150 percent of the federal poverty
level. The cost-sharing requirements for inpatient
stays would be 50% of the cost the agency pays for the first day
of care (for those at or below 100 percent of poverty), 50% of the
cost of the first day or 10% of the total cost the agency pays for
the entire stay (for those with incomes at 101-150% of poverty),
and 50% of the cost the agency pays for the first day of care or
20% of the total cost the agency pays for the stay (for those with
incomes at or above 150% of poverty).
The preferred drug list might not include the drugs that are
necessary for treatment of a Medicaid patient’s cancer, and the
patient who is living paycheck to paycheck might not be able to
afford the cost-sharing for the non-preferred drug (or in the case
of cancer patients, cost sharing for multiple drugs, all
considered non-preferred). A similar situation might exist
for inpatient care. Cancer patients have repeatedly
expressed their interest in receiving their cancer care in
outpatient settings, but inpatient care is required for
administration of certain chemotherapy agents and in some
situations for management of serious side-effects.
Inpatient care is also necessary for those patients whose cancer
care includes surgery. The cost-sharing requirements for
this treatment option may be crippling, and as a result the
patient will seek other options in the place of inpatient care –
options that may not be appropriate or adequate for treatment of
their cancer.
The proposed rule contains two provisions that might offer the
patient some protection if the state imposes the most aggressive
cost-sharing requirements, but the protections are
inadequate. The overall out-of-pocket cap on spending will
offer protection too late in the care process, and patients will
make decisions about specific episodes of care without
consideration of their ultimate out-of-pocket protection.
States are required to define a process whereby a physician would
recommend that a non-preferred drug is the best treatment option
and that no preferred drug is an acceptable alternative, but the
proposed rule does not set appropriate standards for this process
and as a result it is not clear that such process would offer
protections in many states.
The balance between cost and access must be adjusted with regard
to state flexibility on patient cost-sharing in order to protect
patient access to appropriate and high quality care.
Essential Health Benefits
According to the proposed rule, the alternative health plan would
be designed by the choice of one of four benchmark plans, with
coverage of the chosen plan supplemented if necessary to ensure
that all essential health benefit categories are included.
In addition, whereas the preamble to the rule says that all drugs
of the companies that participate in the drug rebate program
should be included in the alternative benefit plan, that language
is not included in the language of the proposed regulation.
We recommend that the regulatory language be amended to correct
that omission.
The agency also says that the states have the flexibility to
“adopt prior authorization and other utilization control measures,
as well as policies that promote use of generic
drugs.” There is the potential for conflict between
the prescription drug coverage of an alternative health plan
supplemented by the state’s essential health benefit standard and
a drug benefit that is consistent with the state’s Medicaid
program. We urge clarification of the coverage standard,
accompanied by protections to ensure that patients can appeal
utilization controls that might prevent them from receiving
necessary medications.
The Medically Frail
We commend CMS for the definition of medically frail and the
inclusion in this definition of “individuals with serious and
complex medical conditions.” Cancer survivors managing
complex treatment or a complicated set of late and long-term
effects would fit this definition and would be exempt from
mandatory enrollment in an Alternative Benefit Plan. We
support this definition, which would permit those with serious and
complex medical conditions the choice of the most appropriate
benefit plan for their special and complex health care needs.
Coordination of Eligibility and Appeals Processes
We commend CMS for seeking advice about the eligibility and
appeals processes from many stakeholders, including states,
consumer advocates, and plain language experts. The
advice is reflected in the solid progress toward a coordinated
system for determination of eligibility for health coverage and
appeals of eligibility decisions. We regret that the
consolidated eligibility process will not be in place until
2015. We urge that every effort be made to honor the date of
January 1, 2015; we do not support the extension of the deadline
until October 15, 2015, for a consolidated system. Until the
implementation date of January 1, 2015, it is our hope that the
use of coordinated content about eligibility will help individuals
and families through an eligibility and enrollment process in
which they may receive notices from Medicaid, the Children’s
Health Insurance Program, and the Exchange.
Certified Application Counselors
We support establishment of the “Certified Application Counselor”
program and the requirement that every exchange have such a
program. We also approve of the proposed standards for
training and performance for Certified Application Counselors,
which will help to ensure that these counselors provide effective
assistance to individuals and families evaluating health insurance
options. We urge CMS to address the relationship among
Navigators, Assisters, and Certified Application Counselors.
In addition, although it is outside the scope of this regulation,
we urge the agency to offer guidance about possible funding
streams or mechanisms to support the Certified Application
Counselor programs.
*****
We appreciate the opportunity to comment on the proposed rule
including many core standards to guide the operation of the
exchanges and the expanded Medicaid program.
Sincerely,
Cancer Leadership Council
American Society for Radiation Oncology
Bladder Cancer Advocacy Network
Cancer Support Community
The Children's Cause for Cancer Advocacy
Fight Colorectal Cancer
International Myeloma Foundation
The Leukemia & Lymphoma Society
LIVESTRONG
Lymphoma Research Foundation
Multiple Myeloma Research Foundation
National Coalition for Cancer Survivorship
National Lung Cancer Partnership
Prevent Cancer Foundation
Susan G. Komen for the Cure Advocacy Alliance