Four major categories—access to care, education and awareness, quality of life and research support—constitute the essential components of quality care for ovarian cancer patients. Our Ovarian Cancer State Report Card Advisory Committee identified specific criteria within each of these categories. We used those criteria to evaluate the extent to which the legal and regulatory environment within each state helps women gain access to quality care. The project team assessed the criteria to determine measurable elements that contributed to the overall criteria. The following information describes why each element is important for women with ovarian cancer, and gives a nationwide snapshot of our findings.
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ACCESS TO CARE
Access to care is a widespread concern for those involved in public health. Optimal care for women who are suspected of having ovarian cancer includes prompt diagnosis, surgery performed by a gynecologic oncologist and access to the full range of care along the continuum of their disease. This encompasses monitoring high risk women and those in remission, treating those with active disease, providing support services at all points and assisting with end-of-life issues.
For the purposes of this report, we looked at elements related specifically (although not exclusively) to ovarian cancer. These included access to gynecologic oncologists; direct access, standing referrals and second opinions; access to clinical trials; insurance coverage of diagnostic tests and prescription drugs; and access to genetic counseling and testing.
Gynecologic oncologists: Studies show that when a gynecologic oncologist performs the initial surgery for women with ovarian cancer, they live longer than women whose surgery is performed by other types of surgeons. Gynecologic oncologists are trained in both oncology and gynecology, and have significant experience with ovarian cancer. Unfortunately, due to a variety of barriers, many women do not have their surgery done by these specialists. We recorded the number of gynecologic oncologists per capita in each state, which ranged from none to 1.5 per 100,000 residents.
Direct access, standing referrals and second opinions: Often, a gynecologist is the most appropriate provider to diagnose a suspected case of ovarian cancer. Some insurance plans require that a woman have a referral to see any specialist, including gynecologists, which may prevent her from getting prompt care for ovarian cancer. Barriers to care also exist if a woman is required to get a referral every time she sees a specialist, such as her treating gynecologic oncologist or medical oncologist. Similarly, a woman may decide not to seek a second opinion from a specialist if it is not covered by her insurance.
Our review found that 33 states have laws requiring insurance companies to allow women to see a gynecologist without a referral; six require coverage of one gynecologic exam per year. Nine states have no laws on the topic. Twenty-six states require that a patient be allowed a standing referral for a specialist, which allows her to make multiple visits to a gynecologic oncologist or other care provider. More than one-quarter of the states require that an insurance company allow the patient to receive a second opinion; however, two of these states only require that second opinions be covered for surgical procedures.
Access to clinical trials: Clinical trials provide scientific data about new treatments and give patients access to drugs and therapies not otherwise available. This is especially important for women with ovarian cancer, as three in four women will have at least one recurrence and frequently have developed resistance to initial therapies. However, only three percent of adults with cancer participate in clinical trials. One reason for low participation is the expense: some insurers will not cover the routine costs of care—care that is necessary regardless of participation in a trial—for patients who participate in clinical trials. Thirty-five states require that insurers cover the routine costs of care for patients on clinical trials. There are other barriers to clinical trial enrollment; however, coverage of routine costs of care is a barrier that state governments can address.
Insurance coverage of medications: Caps on co-payments are particularly important for women with ovarian cancer. These women may take numerous prescription drugs, some of which have co-payments in the thousands of dollars. Many states have laws that address patients’ out-of-pocket costs. Laws that are helpful to patients set a statutory limit on annual out-of-pocket expenses or cap the dollar amount. There also are problematic laws for patients that set limits on the amounts an insurance company is required to pay a beneficiary. However, the vast majority of state laws regarding out-of-pocket medical expenses are linked to high-risk pools, consideration of which was not within the scope of this project.
Only nine states impose caps on co-payments; many other states require a committee to determine the appropriate levels. One state with a law addressing out-of-pocket expenses applied it only to health maintenance organizations (HMOs); another state’s law only applied to outpatient services. This report only considers legislated caps on co-payments. But, limitations on the types of benefits provided and policies that allow insurers to exempt certain payments also could harm women with ovarian cancer, as Medicare data show that this disease is the most expensive cancer to treat in the first year after diagnosis.
The high cost of prescription medications used in cancer treatment, including oral chemotherapy agents, can effectively price the drugs out of reach for patients. Oral chemotherapies are often more expensive for patients than intravenous chemotherapies, because they are delivered differently and therefore considered different types of drugs for the purposes of insurance plans. As a result, oral therapies often are covered under a pharmacy benefit while infused or intravenous therapies typically are covered under a medical benefit. Parity between oral and infused therapies is important to ensure that patients can afford their care and receive treatment in the manner and setting most appropriate for them. Some states have enacted oral chemotherapy parity laws, helping patients receive oral chemotherapies at costs similar to those for IV chemotherapy.
Affordable access to oral contraceptives is also important, as use of these drugs is proven to reduce a woman’s risk of ovarian cancer. Many states have contraceptive equity laws that require insurance plans covering prescription drugs to include prescription contraceptives. However, 20 states—the majority of those that have such laws—allow insurers or employers to opt out of the mandate, usually for religious reasons.
It is important to note that approximately 60 percent of cancer treatment is off label – i.e., the treatment is not included in the specific uses approved by the Food and Drug Administration, but supported by evidence from scientific studies. It is therefore essential that off-label uses be covered and reimbursed adequately by insurers. Thirty-three states have laws requiring insurers to cover off-label prescription drug use.
Insurance coverage of diagnostic tests: Diagnosing ovarian cancer is difficult; most women are diagnosed when the disease is advanced and survival rates are the lowest. Currently, there is no single reliable test to diagnose ovarian cancer. However, data show that most women with ovarian cancer have symptoms, and that testing a blood marker and using imaging can help ascertain whether a woman has ovarian cancer. A diagnosis can be confirmed only by pathology results after surgery, but coverage for these diagnostic tests can help a woman determine whether she should seek further care from a gynecologic oncologist.
Only five states have laws that require insurance coverage for all scientifically proven, medically accurate diagnostic tests. Three additional states require coverage of cancer diagnostic or screening tests, but specify which types of cancers are eligible (generally breast, prostate, cervical and colorectal).
Access to genetic testing and counseling: Approximately 10 percent of women with ovarian cancer have a mutation in the BRCA gene, which also is linked to breast cancer. For women with a family history of breast and ovarian cancer, genetic counseling and testing may be warranted. Genetic status can be important for understanding family risk and choosing appropriate therapies.
The Federal Genetic Discrimination law prohibits insurance or employment discrimination based on genetic status; most states have their own laws prohibiting genetic discrimination. Consequences for violating the law include: revocation or suspension of the insurer’s license; the right for patients to sue in civil court; regulatory penalties imposed by the state; and/or civil liability, criminal penalty or administrative fines. Only four states have no laws whatsoever about genetic discrimination.
EDUCATION AND AWARENESS
Too often, women and their health care providers miss or dismiss the symptoms of ovarian cancer, or miscalculate risk. By educating women and providers about the symptoms and risk factors of this disease, states can improve the odds that a woman will seek appropriate medical care and be diagnosed promptly. For the purposes of this report we considered elements that related to both professional and public education.
Education of health care providers: As noted earlier, appropriate referral for surgery is key to survival for women with ovarian cancer. Medical practitioners need to be informed about the risks and symptoms of ovarian cancer, so they will consider the disease during the diagnostic process and refer women suspected of having the disease to gynecologic oncologists.
The Alliance offers a free educational program for medical and nursing students, Survivors Teaching Students: Saving Women’s Lives®, which teaches them about the symptoms of ovarian cancer and the diagnostic process. Twenty-nine states and the District of Columbia have at least one Survivors Teaching Students program; 21 states have none.
Public Education: An informed public makes it more likely that women will seek care when they experience symptoms that might indicate ovarian cancer. Thus, public education regarding the risks and symptoms of ovarian cancer can help ensure that women get to doctors quickly—a key factor in early disease detection. It is important for women to be aware not only of their risk factors and the symptoms of ovarian cancer, but also the appropriate diagnostic tests.
Much public education is provided by local ovarian cancer groups or through state cancer plans. We looked for these elements as well as states’ participation in the United States of Teal, a program the Alliance led in 2010 and 2011 encouraging state legislators to raise awareness of ovarian cancer.
Local support groups dedicated to ovarian and gynecologic cancers provide public education and services in communities across the United States. The Alliance offers a Partner Member program, which connects local support groups in a national network. Partner Members are independent nonprofit organizations that provide support services, raise funds for research and educate the public about ovarian cancer. Twenty-six states have at least one Partner Member, and 33 states have other ovarian cancer groups. Although the vast majority of states have one or more support groups for women with ovarian cancer, we identified 12 states with none.
A state’s cancer plan sets out priorities for reducing the burden of cancer, typically over the course of a five-year period. These plans can focus on specific disease types and interventions, or address the continuum of care—from risk to end-of-life. An ideal cancer plan, with respect to ovarian cancer, includes three elements: information about genetic risk and family history; the symptoms of ovarian cancer; and a discussion of the disease specifically. While all 50 states and the District of Columbia have cancer plans, we found 22 states with out-of-date plans (i.e. the dates they covered had passed). Only four states had cancer plans with two of the three elements related to ovarian cancer; 21 states had one of the three; and 26 states had no mention of any of the above elements.
In 2010 and 2011, the Alliance led the United States of Teal, a campaign to help state legislators raise awareness of ovarian cancer. Advocates from the Alliance asked local legislators to take actions that would increase awareness of the disease, such as reading a floor statement, submitting a letter to the editor or wearing teal—the color of ovarian cancer awareness. If one or more legislators in a state took action, the state was counted as participating in the United States of Teal. In 2010 (the year addressed by this report), 23 states took part in the United States of Teal.
QUALITY OF LIFE
Support services that help a woman cope with her diagnosis and treatment are an essential component of quality care for ovarian cancer. In addition to patients, family members and caregivers often need emotional, financial and/or medical help. While most states have programs to address quality of life, we found wide disparities in the types of programs offered.
Patient Navigator Programs: Patient navigators help cancer patients, families and caregivers work within the health care system to get needed resources and treatment. This can include medical care, financial assistance, psychosocial support and help with practical needs such as transportation to a medical facility. A majority of states had at least one Patient Navigator program, with a high of 27 programs in one state; 15 states did not have any.
Psychosocial needs: Women with ovarian cancer often turn to support groups to cope with the stress of diagnosis and treatment. In order to address the wide-ranging psychosocial needs of women with ovarian cancer, we considered the existence of ovarian cancer support groups. As with Public Education, we looked at Partner Members of the Alliance and other local ovarian cancer support groups. Twenty-six states have at least one Partner Member and 33 states have other ovarian cancer support groups. Although the vast majority of states have one or more support groups for women with ovarian cancer, we identified 12 states with none.
Palliative care: Palliative care is an important, yet often overlooked, need that cancer patients have; it should begin at diagnosis and be provided through the entire trajectory of a patient’s experience with her disease. Palliative care includes pain and symptom management, whether those effects are caused by the cancer itself or by treatments. Quality palliative care for women with ovarian cancer must include palliation of stress, pain and other symptoms.
We used a report card from the Center to Advance Palliative Care and the National Palliative Care Research Center to determine how many such programs exist at hospitals in each state. Approximately half of the states have hospitals with palliative care programs.
Survivorship programs: Like patient navigators and local ovarian cancer groups, Survivorship Centers of Excellence are a resource for survivors, providing outstanding programs covering all aspects of life with cancer. For example, LiveStrong Survivorship Centers provide information, care and services to cancer survivors, their families and health care providers. The centers offer clinical services, patient education and health promotion, support groups and counseling, integrative/complementary medicine, community outreach and research. There are eight states with a Survivorship Center of Excellence.
End-of-life and hospice care: Hospice programs bridge the gap between treatment and end-of-life, allowing patients to transition at their own pace from curative treatment to supportive care aimed at managing symptoms and improving quality of life. This gives patients an opportunity to finish the business of life and allows family, loved ones and caregivers time to adjust to this transition. The availability of hospice and end-of-life care is critical for women with ovarian cancer, as less than half will survive five years past their diagnosis.
Thirty-three states license hospice facilities and allow Medicaid funds to pay for services, though 11 states require a certificate of need for a hospice facility—a potential obstacle to quality care for women with ovarian cancer.
Despite improvements in diagnosing and treating ovarian cancer, death rates have not changed significantly in the more than 40 years since the War on Cancer was declared. Research is essential to find better tools for diagnosing and treating this disease.
National Cancer Institute programs: The federal government is the largest funder of nonprofit ovarian cancer research in the United States. Approximately $100 million is awarded by the National Cancer Institute (NCI) each year for ovarian cancer research; much of that funding is awarded to institutions through a competitive grant process. In addition to funding research, NCI funding can help an institution elevate the general level of care it provides.
As well as funding research, the NCI designates Cancer Centers across the country. These are institutions that provide a high level of care for cancer patients and participate in clinical trials. Thirty five states have NCI-designated Cancer Centers.
State-based initiatives: State governments can make policies that are aimed at increasing the amount of research conducted in the state. For example, some states provide tax breaks for biotechnology companies. Others allow residents to donate money to a designated ovarian cancer nonprofit organization when submitting their tax return forms. Usually these organizations fund research. States may also allow groups to petition for a special license plate, the proceeds from which are donated to a designated charitable organization. Again, these organizations usually fund research. Only three states have ovarian cancer license plates, though others had license plates funding cancer charities.
Lastly, states may spend their own monies on ovarian cancer research. We found that many states provide funding to Cancer Centers within the state. However, we could not determine whether that money directly funds ovarian cancer research or treatment. Only two states clearly use their own funding for ovarian cancer research. Many Alliance Partner Members and private organizations fund research outside of state-based appropriations, but we were not able to measure these efforts consistently and did not include them in our rankings.