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Breast Cancer Access and Affordability Archives
The impact of breast cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many patients and care partners.
Let us help you make sense of costs, coverage and where to turn to for help.
More resources for Breast Cancer Access and Affordability from Patient Empowerment Network.
This was originally published by The Kaiser Family Foundation on September 26, 2019 here.
Among women in the United States, breast cancer is the most commonly diagnosed cancer and the second leading cause of cancer death. In 2016, an estimated 3.5 million women in the U.S. were living with breast cancer. The Affordable Care Act (ACA) and many state laws have provisions that assure that most women with private insurance, Medicaid, and Medicare have coverage for breast cancer screening services. This typically includes screening mammography for the general population of women, but also can include genetic testing and preventive medications for high-risk women over the age of 35. This factsheet discusses breast cancer screening and prevention services, and reviews the scope of private and public insurance coverage, as well as access to those services for women in the US.
Breast Cancer in the United States
Breast cancer is the most commonly diagnosed cancer among women in the U.S. and makes up 15% of all new cancer diagnoses. Approximately 1 in 8 women (12.8%) will be diagnosed with breast cancer during their lifetime.
- In 2019 there will be an estimated 268,600 new cases of female breast cancer and 41,760 deaths attributable to breast cancer.
- Breast cancer is most commonly diagnosed among middle-aged and older women, with 70% of new cases diagnosed among women 55 and older (Figure 1).
Figure 1: Seven in Ten Cases of Breast Cancer are Diagnosed Among Women 55 and Older
- Most breast cancers are diagnosed at an early stage. Sixty-two percent of breast cancers diagnosed are localized, meaning they are found only in the part of the body they started, while 6% of cases diagnosed have metastasized, meaning the cancer has spread to other regions of the body.
- Risk factors for breast cancer include but are not limited to: a family history of breast cancer, genetic predispositions, personal history with breast cancer, breast density, obesity, drinking alcohol, early menstruation, delayed childbearing and having fewer children.
- In the U.S., while white women have the highest incidence of breast cancer, black women have higher breast cancer mortality rates (Figure 2). These disparities are likely attributable to a combination of factors, such as differences in stage at diagnoses, tumor biology, and genetics, as well as disparities in access to screening, follow up care and treatment.
Figure 2: White Women Have the Highest Incidence of Breast Cancer, but Mortality Rates are Higher Among Black Women
- Although very rare, men can develop breast cancer. In 2019, there will be approximately 2,670 cases of male breast cancer diagnosed and 500 deaths.
Coverage for Breast Cancer Screening and Prevention
While several health organizations issue guidelines for breast cancer screening and prevention, private insurance coverage of preventive services under the ACA is governed by recommendations from the United States Preventive Services Task Force (USPSTF) and the Health Resources and Services Administration (HRSA). Under these guidelines, private group and individual insurance plans and state Medicaid expansion programs must cover the following breast cancer screening and prevention services at no cost to the consumer: 1) screening mammography at least every 2 years and as frequently as once a year for women ages 40 to 74 with average-risk for breast cancer; 2) genetic counseling and testing for mutation of the BRCA1 and BRCA2 genes in some women with a personal or family history of breast, ovarian, fallopian tube, or peritoneal cancer; 3) preventive medication for some women with elevated risk of breast cancer and at low risk for adverse medication effects (Table 1). Some medical professionals recommend other services, such as screening MRIs for women at higher risk for breast cancer, but these services are not currently subject to the ACA’s preventive services coverage requirement.
|Table 1: Breast Cancer Preventive Services Covered Without Cost-Sharing|
|Preventive Service||Target Population||Recommendation|
|Breast Cancer Screening|
(HRSA & USPSTF)
|Women ages 40 to 74 with average-risk for breast cancer (HRSA)Women age 50-74 (USPSTF)||Screening mammography at least every 2 years and as frequently as once a yearScreening mammography every 2 years|
|BRCA- Related Cancer: Risk Assessment, Genetic Counseling and Genetic Testing (USPSTF)||Women with a personal history or family history of breast, ovarian, tubal, or peritoneal cancer or ancestry associated with BRCA 1 and/or 2 gene mutation||Primary care clinicians should assess women with a personal or family history of breast, ovarian, tubal, or peritoneal cancer or who have an ancestry associated with breast cancer susceptibility 1 and 2 (BRCA1/2) gene mutations with an appropriate brief familial risk assessment tool. Women with a positive result on the risk assessment tool should receive genetic counseling and, if indicated after counseling, genetic testing.|
|Breast Cancer: Medications for Risk Reduction (USPSTF)||Women age 35+ at increased risk for breast cancer||Clinicians should offer to prescribe risk reducing medications, such as tamoxifen, raloxifene, or aromatase inhibitors, to women who are at increased risk for breast cancer and at low risk for adverse medication effect|
NOTE: Women with family members with breast, ovarian, tubal, or peritoneal cancer should be screened with one of several screening tools designed to identify a family history that may be associated with an increased risk of breast cancer.
SOURCE: Kaiser Family Foundation. Preventive Services Tracker. As of September 2019.
- Mammography is a low-dose x-ray procedure that provide images of the internal structures of the breast and is the most common screening test for breast cancer.
- Current HRSA guidelines, which define no-cost coverage standards for private insurance, recommend biennial screening mammography to start no earlier than age 40 and no later than age 50 for average-risk women and continue through at least age 74, while the USPSTF breast cancer screening guidelines recommend biennial screening mammography for women aged 50 to 74, and states that starting mammography screening before age 50 should be an individual decision based on preference and patient values. The USPSTF also concludes that there is insufficient evidence to assess the benefits and harms of screening mammography for women 75 years and older.
- In 2015, 58% of women ages 40-49 and 72% of women ages 50-74 reported having had a mammogram in the past two years (Figure 3). Overall, between 2000 and 2015, mammography rates stayed relatively stable. Black women (70%) and women with some college education and more (71%) have the highest mammography rates (Appendix Table 1).
Figure 3: Mammography Use in the United States by Age Group and Insurance Coverage
- Mammography rates vary by state. Ohio and Kansas reported the highest mammography rates (81%) in the nation, while Connecticut reported the lowest rates at 61% (Figure 4 & Appendix Table 2).
Figure 4: Mammography Rates Vary Across States
- Research shows that women with insurance coverage are more likely to report having had a mammogram in the past two years. In 2015, only 30% of uninsured women ages 40 to 64 reported having had a mammogram in the past two years compared to 72% of privately insured women and 58% of women with Medicaid coverage (Figure 3).
- Most professional guidelines suggest starting mammography after age 40, but 47% of women believe women without a family history of breast cancer should begin mammography screening before age 40 (Figure 5).
Figure 5: Almost Half of Women Think Women Without Family History of Breast Cancer Should Begin Mammography Screening Before Age 40
Genetic Testing and Screening for BRCA1/BRCA2 Mutations
- Mutations to BRCA1 and BRCA2, tumor suppressor genes, increase the risk of female breast and ovarian cancers, as well as Fallopian tube, peritoneum, pancreatic, and skin cancers. While almost 13% of women in the general population will develop breast cancer at some point in their lives, 72% of women who have inherited the BRCA1 mutation and 69% of women who have inherited the BRCA2 mutation will develop breast cancer by the age of 80.
- Factors associated with an increased likelihood of having a harmful BRCA1 or BRCA2 mutation include: breast cancer diagnoses before age 50, cancer in both breasts, both breast and ovarian cancers in the same individual, multiple cases of breast cancers, two or more BRCA1 or BRCA2 related cancer deaths in the family, cases of male breast cancer, and being of Ashkenazi Jewish descent.
- Currently, the USPSTF recommends that primary care providers screen women with a personal or family history of breast, ovarian, tubal, or peritoneal cancers or have an ancestry associated with BRCA 1/ 2 gene mutations with one of several screening tools for an increased risk in BRCA genetic mutations. The USPSTF recommends that women with positive screenings receive genetic counseling and if necessary BRCA genetic testing.
- The use of medications to help reduce the risk of or delay the onset of cancer is called chemoprevention. The drugs tamoxifen, raloxifene, and aromatase inhibitors reduce primary breast cancer risk in postmenopausal women.
- The USPSTF recommends that clinicians should discuss and offer to prescribe these risk-reducing medications to some women 35 and older who are at an increased risk for breast cancer and at low-risk for adverse medication effects. Women who are not at an increased risk for breast cancer should not take these medications.
Coverage and Utilization of Services
Most women with public and private insurance have coverage for breast cancer screening services, but the scope of coverage can differ based on the type of insurance plan, how they qualify for Medicaid, and in the case of Medicare, where they live. While there are programs to assist uninsured and underserved women, these programs only reach a fraction of eligible women.
- Private Individual and Group Insurance Plans—The ACA requires most private group and individual insurance plans, including most employer plans, to cover all services rated by the USPSTF with an “A” or “B” without consumer cost-sharing, as well as preventive services for women recommended by HRSA. Plans must cover the full cost of mammograms starting at age 40, genetic screening for high-risk women, and breast cancer preventive medication for high risk women under this policy.
- Medicaid— Women who qualify for Medicaid based on their state’s decision to expand Medicaid under the ACA are entitled to the same screening and preventive services as women who are covered by private insurance. For women who qualify based on other traditional eligibility pathways, breast cancer screening and preventive services are considered “optional” under traditional Medicaid programs and the scope of coverage is determined by the state. A 2015 state survey of Medicaid programs, however, found that most states cover breast cancer screening and prevention services under expansion and traditional eligibility pathways.
- Medicare—Medicare Part B covers annual screening mammograms at no-cost for women 40 and over. Coverage for BRCA genetic testing is not required nationally, but may be covered in some regions based on local coverage determinations. Women enrolled in a Medicare Part D drug plan who are at high risk for breast cancer may have coverage for chemoprevention drugs, but there is no requirement for Part D plans to cover these drugs without cost sharing.
- TRICARE—TRICARE, the public program for military personnel and dependents, covers screening mammography for women 40 and older, BRCA genetic counseling, and chemoprevention, but is not required to offer coverage without cost-sharing. Out-of-pocket costs for consumers vary by an individual’s specific level of TRICARE coverage and active duty status.
- The National Breast and Cervical Cancer Early Detection Program (NBCCEDP)—The NBCCEDP helps low-income, uninsured, and underinsured women gain access to breast and cervical cancer screening, diagnostic services, and referrals to treatment. Uninsured and underinsured women are eligible for the program if they are at or below 250% Federal Poverty Level (FPL) and are between the ages of 40 to 64 for breast cancer screenings. Although about 10% of U.S. women are eligible for the NBCCEDP breast cancer screenings, the program only serves about 11% of those who are eligible. In 2017 almost 192,000 women received NBCCEDP funded mammograms.
- The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA)—Passed in 2000, the BCCPTA gives states the option to extend Medicaid coverage to uninsured women under 65 who are diagnosed with breast or cervical cancer through NBCCEDP screening programs. Although all states adopted this option, states have different eligibility requirements. In 20 states and DC, women are only eligible for Medicaid coverage if their screening and diagnosis was paid for by NBCEEDP funds; in 14 states women are eligible for Medicaid if their provider receives NBCEEDP funds or the services provided fell within the scope of the NBCEEDP grant; and in 16 states women are eligible for Medicaid coverage for treatment regardless of where they were screened as long as they meet the other eligibility criteria. In 2013, almost 57,000 uninsured women with a breast cancer diagnosis gained Medicaid coverage through the BCCPTA.
- While many women now receive no-cost coverage for mammography services, women who get diagnostic mammograms, those who get preventive services out-of-network or who are in grand-fathered plans may be subject to co-payments, cost-sharing or deductibles. In the 2017 Kaiser Women’s Health Survey, 16% of women with private insurance reported paying out-of-pocket costs for a mammogram, compared to 3% of women with Medicaid coverage and 11% of uninsured women.
Appendix Table 1
Appendix Table 2
Appendix Table 2: Mammography Rates by State, 2014-2016
Percent of women ages 40 and older who report having had a mammogram within the past 2 years
|State||All Women||White||Black||Hispanic||Asian & Native|
Hawaiian or Pacific Islander
Patient Assistance Programs: A Guide for Patients
Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.
When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.
It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.
While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.
Find a PAP
The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.
Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.
John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.
There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.
While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.
Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.
AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”
Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.
The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.
Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.
Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:
- Have very limited or no drug coverage from public or private sources
- Must demonstrate a financial need based on a set income and assets
- Provide proof of US residence or citizenship.
“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”
In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.
“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”
Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.
AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.
Are PAPs Worth It?
For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.
Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”
Deana Hendrickson talks about how important it is to connect with other patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains: