Protecting Cancer Care: Improving Transparency and Patient Access
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Protecting Cancer Care:
Improving Transparency
and Patient Access
A White Paper from the Oncology Therapy Access Physicians Working Group
H istorically, cancer care
has been protected
from many of the insurance
to instantly solve all of these problems,
improvements in the areas of patient
access and transparency are essential,
issues that have beset other and thus these are good places to begin.
diseases. The life threatening
nature of cancer was
IMPROVING PATIENT ACCESS TO
recognized by physicians,
CANCER TREATMENTS
patients, and payers alike,
The cost of cancer care in the United
and the barriers to obtaining
States exceeds $125 billion annually and
payments from insurers
CONTENTS is expected to increase nearly 40% by
were minimal. Over the
2020.1 The escalating costs of treatment
1 Improving Patient past decade, however, this
have been attributed to the aging
Access to Cancer situation has changed. Policies
population, increased diagnosis of cancer,
Treatments dictated by insurers have
and new state-of-the-art medications
2 Specialty Tiers begun to erode the protection
targeted at specific molecules on cancer
that formerly characterized
3 Prior cells.1 Many of these new medications
coverage of cancer treatment.
Authorization dramatically improve the treatment
This trend is manifested by
of cancer and it is often argued that
4 Coverage Parity reduced patient access to high
solutions to the cost issues must also
5 Improving quality cancer care and a lack
preserve the development of innovative
Transparency of transparency regarding the
therapies.
in Cancer Care recommended treatments.
In response to the demographic and
6 Transparency of As physicians, we are
economic trends in cancer care, insurers
Clinical Pathways committed to providing
have devised a number of strategies
the best care possible for
7 Conclusions designed to mitigate their costs.
our patients. However, we
Unfortunately, many of these policies
face serious challenges in
limit patient access to treatments from
meeting this goal, including
which they could benefit. Three of the
the complex nature of cancer,
main policies that must be amended
involvement of multiple
in order for patients to access cancer
medical specialists, numerous
therapies are (1) specialty tiers/high co-
treatment options, a confusing
pays, (2) prior authorizations, and (3)
insurance system, and the
parity of coverage not only for infusion
inability of our patients to pay
and oral therapies, but also for site of
their sometimes outrageously
care. Each of these policies is discussed
high out-of-pocket expenses.
in the following sections.
Although it is not possible
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 1of our patients cannot afford them—
Patients Surviving At Least 5 Years
After Being Diagnosed with or cannot do so without a significant
Chronic Myeloid Leukemia financial hardship. For example, specialty
tier medications cost $40,500-95,000
100%
per patient per year4, and co-pays for
80% drugs on the specialty tier often range
from 25% to
60%
33%.5 This means
“I worry about the
40% that patients
middle class. They
who require a
20% make too much
specialty tier drug
0% with an annual money to qualify
Before Imatinib After Imatinib cost of $60,000 for pharmaceutical
(1990-1992) (Today) company-sponsored
would need to
Sources: American Cancer Society, 20122
pay $15,000 assistance programs,
and Druker et al, 20063
out of pocket but cannot afford the
Specialty Tiers per year for cancer medications.
Insurance plans typically incorporate their medication One of my patients
several “tiers” that determine the level alone (based was a professional
of patient cost sharing or the amount of on a typical whose cancer was
medication cost that must be paid by 25% co-pay) in not improving with
beneficiaries (i.e., co-pay). The lowest addition to their
treatment. I just
level of cost sharing, tier 1, usually other co-pays
couldn’t figure out why.
includes generic drugs. Tier 2, the next and deductibles
After we lost him, I
higher co-pay level, typically includes for office visits,
preferred name-brand drugs, and tier found out that he had
surgery, and
3 includes non-preferred, name-brand hospital care. This
not taken his high-cost
drugs. Tier 4, or the “specialty tier,” is an exorbitant medicine because he
includes the more expensive drugs such amount of money didn’t want to bankrupt
as those targeted toward specific types for most people. his family. It goes
of cancer. without saying that such
Further
tragedies should not
Typical Medication Tiers in complicating this
Healthcare Benefit Plans scenario is the
have to happen.”
Tier 1 Generic drugs impact of cancer -Dr. Nadim Nimeh, MD
on a person’s
Tier 2 Preferred name brand drugs
ability to work.
Tier 3 Non-preferred name brand drugs
Cancer and its
Specialty Higher cost medications, treatment can
Tier including many cancer therapies
lead patients to
The problem with this scheme is that quit or lose their
co-insurance costs for the specialty tier jobs and hence
drugs are typically so high that many their insurance,
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 2which in turn can lead to insurmountable Clearly, specialty tiers that require high
financial burdens, including bankruptcy.6 co-pays are unaffordable for most
To help minimize the financial burden, patients. One potential solution is for
many patients do not take their insurers to raise their co-pays on lower-
medications as prescribed,7 which of tier (i.e., less expensive) drugs to offset
course reduces or even negates the the costs of specialty tier medications.
effectiveness of treatment. Other solutions are also possible, and
it is imperative that stakeholders work
Financial Distress Associated together to identify policies that
With Cancer Treatment
preserve the needs of insurers while
• Cancer patients are 2.65 times more likely increasing patient access to specialty tier
to go bankrupt than people without
cancer therapies.
cancer.6
• A random sample of people who filed for Prior Authorization
bankruptcy in the US found that >60%
filed because of medical bills—even though Another policy that limits patient
¾ had insurance at the time of their illness.8 access to cancer treatments is prior
• In a study of 300 insured adults with authorization. Prior authorization is the
cancer:7
approval of a therapy by insurers before
- 16% reported high or overwhelming
financial distress it is given to a patient. The concept of
- 27% did not adhere to their medication pre-approval is not, in itself, a problem.
regimen However, problems arise when insurers
- 14% skipped doses to make the take a prolonged time to approve
medication last longer
therapies, particularly when they are
- 11% took less medication than pre-
scribed to make medication last longer urgently needed to help reduce cancer
- 22% did not fill a prescription because growth or, in the case of supportive care
of cost drugs such as hematopoietic growth
factors, reduce the risk of serious
Hundreds of advocacy groups have complications of treatment. Some states
alleged that the high patient costs for have passed legislation that requires
specially tier medications discriminate insurers to respond to prior authorization
against those with cancer, multiple requests within 48 hours or the request is
sclerosis, AIDS, and other chronic automatically approved.10,11 Moreover, due
diseases—the ones who require specialty to variation in the forms physicians must
tier medications.9 Under many insurance fill out for pre-approval, the legislation
plans, these patients are required to requires that all prior authorization
pay percentages rather than flat co- requests be standardized, with electronic
pays and higher overall dollar amounts submissions allowed. These steps greatly
for their medications than patients with improve the prior authorization system
other diseases. This is true even for and should be implemented by all states.
insurance plans sold through exchanges
Prior authorization policies could be
developed under the Affordable Care Act,
further improved with several additional
in which non-discrimination was a major
common sense amendments. First, if
provision.9
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 3insurers pre-authorize therapies, they was to increase patient access by making
should pay for them. Pre-authorized needed medications available to more
claims should not be up for re-review patients.11 There is general agreement
after they have been approved and that this program is very effective when
the patient has already received the applied as intended.
therapy. Although this seems intuitive,
If this program were misused by eligible
it is not uncommon for insurers to deny
institutions, however, it could have an
pre-authorized claims after the fact.
unforeseen consequence of contributing
Moreover, if the drug is being used in
to the closure of local community cancer
line with its Prescribing Information as
centers. These closures may prove
approved by the US Food and Drug
problematic in rural areas where patients
Administration, physicians should be
may have to drive many miles for care.
able to treat patients prior to receiving
Commuting to the city is difficult for
pre-approval.
patients with limited income and for
Coverage Parity seniors, who may have trouble navigating
Parity for Site of Service urban roadways and parking lots or
Coverage parity refers to comparable must rely on family members or friends
insurance coverage for comparable to drive them. Furthermore, seniors may
services and medicines. Several parity feel more comfortable at local centers
issues are at the forefront of cancer and may therefore be better able to
care today, one of the most notable of explain their symptoms, which in turn
which involves the site of cancer care. In will result in better care. Experts agree
the United States, cancer treatment is that local cancer centers are in danger of
available at various locations, including extinction, with a study by the American
community clinics, hospitals affiliated Society of Clinical Oncology (ASCO)
with universities, and private hospital finding that 63% of small oncology
outpatient centers. practices were likely to merge, sell, or
close operations in the coming year.13
Although it seems logical for insurers
to provide comparable coverage for Infused Versus Oral Medications
medicines and services at all of these Another notable parity issue in cancer
locations, certain treatment sites tend is the preference that insurers give to
to have a disproportionate number of medications (i.e., chemotherapies) that
uninsured or underinsured patients— must be injected or infused over those
often in populous inner city areas. In taken orally in the form of pills. Oral
order to make it possible for physicians agents have a number of advantages
and institutions to treat these patients, over injection and infusion therapies,
federal programs such as 340B Drug such as being more convenient—
Pricing Program were implemented. swallowing a pill is easier than traveling
The 340B program mandates that to a treatment center for a prolonged
drug manufacturers sell medicines to intravenous infusion and minimizes
qualifying institutions at significantly disruptions in work and everyday life.
reduced prices.12 The goal of this program Moreover, many of the recently approved,
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 4state-of-the-art medications that target or not covered by their insurance, and
molecules associated with cancer cells the out-of-pocket expenses for which
are available only in oral formulations. they are responsible. Insurance-related
However, traditional infusion therapies costs are typically hidden in verbose
are preferred for some patients due policies that are difficult for patients
to personal and cancer-specific to understand, and cancer centers
considerations. studiously avoid publicizing the costs of
their services and procedures. However,
In many states, insurers still differ in
patients want to know these costs and
the extent to which they cover infusion
to discuss them with their healthcare
therapies and oral therapies for the
providers, as indicated by a recent survey
same types of cancer. For traditional
of men with advanced prostate cancer.16
chemotherapy administered via infusion
into the vein, patients must typically
pay a set fee for the medication and its “Reducing price variation
infusion.14 Annual out-of-pocket costs are for the 108 million Americans
usually capped as part of the medical
with employer sponsored
benefit of the patient’s insurance plan.
In contrast, oral agents to treat cancer insurance could save the
are typically covered under patients’ nation as much as $36 billion
pharmacy benefit plan, which requires
per year.”
them to pay a percentage of the drug’s
cost—which can run into the tens of Thomson Reuters, 201217
thousands of dollars annually if the drug
is classified by the pharmacy benefit In addition to the high costs of cancer
plan as “specialty tier.” Moreover, there care, several other developments are
is often no out-of-pocket limit for nudging the system toward greater
these medications.14 transparency. These include patient
access to electronic information and
The good news is that 33 states and
studies showing that healthcare costs
the District of Columbia have now
for the same procedure in the same
passed laws requiring insurers to
geographic area can vary by more than
provide coverage parity for oral cancer
100%. Indeed, it has been estimated
therapies.15 Extending these laws to
that reducing price variation for insured
the remaining states is a priority for
individuals could save the US $36
improving patient access to cancer care.
billion annually.17
To improve transparency, insurance plans
IMPROVING TRANSPARENCY IN should include clear formulary lists and
CANCER CARE provider networks. They should include
Transparency of Costs, Coverage, the tiers and co-pays with real-world
and Co-Pays examples of amounts that patients
Cancer patients are frequently surprised would need to pay for some of the
by the costs of care, the items covered most common diseases. The costs of
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 5therapies, including diagnostics, imaging,
• Initially, payments should be increased
and medications, along with other fees, for practices using pathways; increases
should be made apparent to patients. should be large enough to cover the cost
and time of acquiring and implementing
Transparency of Clinical Pathways pathways.
Clinical pathways specify which • CMS should develop a certification
process for care pathways.
treatments patients should receive
• After certified pathways have been
and in which order. They are typically developed, practices should be expected
developed by physicians working with to use and adhere to them, and
payments should be reduced if pathways
insurers who consider both available are not used.
evidence and cost; in this way, clinical • Payers and providers should collaborate
pathways can help reduce costs and to evaluate the effectiveness of pathways
in improving patient outcomes and
even improve cancer care.18 Many clinical controlling costs.
pathways are well designed and accepted
by physicians. Unfortunately, however,
some do not rely as heavily on evidence Following the development of clinical
and are designed based on cost of care cancer pathways, insurers typically
instead of professional consensus. The offer financial incentives to physicians
American Society of Clinical Oncology or physician practices for adhering to
has outlined guiding principles for the them a certain percentage of the time.
development and use of cancer care According to the US Oncology Network,
pathways, as listed in the following table. this percentage is ideally about 80%—
meaning that about 80% of patients are
suitable for the pathways.20 This leaves
ASCO Guiding Principles for the room for flexibility 20% of the time to
Development and Use of Oncology
Care Pathways19 accommodate patients with special
circumstances. For instance, if the clinical
• Pathways should be developed with the pathway specifies a treatment that can
input of oncologists.
cause severe skin reactions, patients with
• Pathways should describe all aspects of
cancer care, not just anti-cancer treatment. a history of such reactions may be better
• Pathways should give appropriate suited to a different medication that
consideration to costs of alternative provides comparable benefits but with
approaches to care.
less risk of skin reactions.
• Oncology practices should be able to use
the same pathways with all payers.
Perhaps more disconcerting are the
• Efficient methods of using pathways and
of documenting and auditing adherence insurers who pay physicians for each
to pathways should be developed. patient they keep on their pathways. For
• 100% adherence to pathways is likely example, WellPoint, the second largest
impossible and undesirable; deviations
should be used to advance knowledge
insurer in the US, pays oncologists $350
about appropriate care. per patient per month to remain on one
• Standards for adherence to pathways of their clinical pathways.21 In this case,
should be established in advance based there is a financial incentive for physicians
on evidence and experience.
continued to place each individual patient on a
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 6pathway. If physicians deviate from to rein in their own costs, insurers may
the pathway, which will certainly occur require exorbitant co-pays/co-insurance
in selected cases, they will still get for state-of-the-art medications,
reimbursed.22 However, the physician fail to respond to requests for prior
will not receive $350 per month for authorization in a timely manner, and,
those patients. unbeknownst to the patient, pay doctors
to place them on a clinical pathway
Moreover, clinical pathways can be
designed to utilize treatments that
different for each insurer, forcing
combine efficacy with lower cost.
physicians into a “treatment by insurance”
routine where the treatment patients Part of the solution to the cost challenges
receive varies by which insurance they may lie in greater transparency across the
have.21 Many experts believe that it should entire healthcare system. When costs of
be the practice or hospital that develops procedures and medications are readily
the pathways and insurance companies accessible and insurance policies written
that agree to abide by them rather than in an approachable manner, patients will
the other way around. engage in informed healthcare choices.
Regardless of which clinical pathway These issues are especially critical in
is followed, however, patients have cancer given the serious nature of the
a right to know what care is being disease. It is unfair for people who have
recommended for them and what they paid their insurance premiums and/
are scheduled to receive—that is, the or Medicare payroll taxes for decades
pathway and the financial incentives to be surprised by lack of adequate
must be transparent. Although many coverage when they need help paying
might decry the inability of patients to for a life-and-death illness. Policymakers
understand such information, there is and citizens must work to protect
clearly a trend toward greater patient patient access to cancer therapies by
engagement in cancer care and a call promoting transparency and rectifying
from the Institute of Medicine to provide patient unfriendly insurance practices
information that patients can understand.1 such as specialty tiers, prolonged
prior authorizations, and lack of equal
CONCLUSIONS
coverage for comparable services
The cost of cancer care continues to rise,
and treatments.
compromising our patients’ ability to
access needed therapies. In an attempt
ONCOLOGY WORKING GROUP MEMBERS
Robert Miller, M.D. Rachel Brem, M.D. Lucy Langer, M.D. David Charles, M.D.
Alan Marks, M.D. Emily Chan, M.D. Nadim Nimeh, M.D.
Please note that the views expressed in this document do not necessarily reflect those of the
institutions with which the Working Group Members are affiliated.
Join AfPA’s Oncology Therapy Access Physician Working Group
Established in 2014, the Oncology Therapy Access Physicians Working Group is a home for oncologists interested in health policy
issues relating to access to cancer therapies. Working Group members collaborate in development of educational resources such
as white papers, policy briefs and videos to be utilized in encouraging informed policymaking, while ensuring the physician’s
perspective is shared as policymakers consider how to balance access and costs. Physicians interested in joining the working group
or participating in an upcoming meeting should contact AfPA at www.AllianceforPatientAccess.org or call 202-499-4114.
INSTITUTE FOR PATIENT ACCESS • PROTECTING CANCER CARE OCTOBER 2014 7References
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This white paper is authored by the members of the Oncology Therapy Access Physicians Working Group
and sponsored by the Institute for Patient Access.
I f PA
Institute for Patient Access
www.InstituteforPatientAccess.org
The Institute for Patient Access • 2000 M Street NW Suite 850 • Washington, DC 20036
The Oncology Therapy Access Physicians Working Group is a project of the Alliance for Patient Access.
The working group is supported by educational donations from: Astellas Pharma US, Inc., Millennium
Pharmaceuticals, Inc., Bristol-Myers Squibb and the Institute for Patient Access.
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