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TAILORx Results May Mitigate Financial Toxicity
June 21, 2018

TAILORx Results May Mitigate Financial Toxicity

Molly MacDonald is founder and CEO of The Pink Fund, a non-profit providing 90 days of non-medical financial aid to cover basic costs of living expenses, such as health insurance, housing, transportation, and utilities for patients with breast cancer in treatment. Since 2006, The Pink Fund has made $2.7 million in payments on behalf of 1939 survivors. MacDonald herself was diagnosed with breast cancer in 2005; while the disease was unlikely to take her life, it did take her livelihood. MacDonald is recognized by Crain’s Detroit Business as a Health Hero and is a member of the Advisory Board Member for the University of Michigan’s Center for Value-Based Insurance Design.
My early morning alert from The New York Times brought welcome news as I scrolled through my phone the first Sunday of June in my Chicago hotel room, plotting out my plan to attend various sessions at the annual meeting of the American Society of Clinical Oncology (ASCO) that day.

Results from the TAILORx (Trial Assigning Individualized Options for Treatment Rx) had just been released, proving that 70% of patients with early stage breast cancer can safely, and with confidence, forego chemotherapy based on their Oncotype DX breast recurrence score. With more than 10,000 women from 6 different countries, TAILORx is the largest breast cancer treatment trial ever performed.

Oncotype DX, was not an option for me when I was diagnosed with early-stage disease in the spring of 2005, for 2 reasons: the test was experimental and not covered by insurance, and my DCIS diagnosis limited my treatment to surgery, radiation, and 5 years of hormonal therapy.

TAILORx is very good news for an estimated 60,000 women a year, who in years past would have received chemotherapy, possibly risking long-term physical and mental side effects, in addition to experiencing what is now an additional and recognized side effect of cancer treatment: financial toxicity.

The term was defined by S. Yousuf Zafar, MD, MHS, and Amy P. Abernathy, MD, PHD, in 2013: “Financial toxicity is the emotional, mental, and physically debilitating, often-life threatening, financial side effect induced by cancer treatment.”

In my experience over the last 13 years through my work at The Pink Fund, providing women in active treatment for breast cancer with limited, yet critical, nonmedical financial aid, we see acute financial toxicity when a patient’s ability to work is compromised by treatment. Forced to take substantial time off work without pay, and in many cases without disability benefits, for many their treatment protocol extends beyond their FMLA benefit and cancer costs them their jobs. The Pink Fund provides limited yet critical financial support which helps meet basic needs, decrease stress levels, and allow breast cancer patients to focus on healing while improving survivorship outcomes. The 90-day program covers expenses for housing, transportation, utilities, and insurance.

Think, lost income colliding with high deductibles and co-pays catapulting patients and their families into a financial abyss from which it can take years to climb out.

At The Pink Fund, we educate around this problem in the following way: “While fighting for their lives, many woman in active treatment for breast cancer lose their livelihoods, experiencing a loss of income that often leads to catastrophic financial losses and the need to rebuild financial health.”

For many, treatment decisions are all about lost income as most medical expenses can be negotiated and paid over time, while basic cost of living expenses—like your mortgage, health insurance premiums, car payments—cannot, forcing women to make extreme choices. Choices that result in nonadherence to treatment, comorbidities, medical bankruptcy, and in some cases, the most dramatic of all, early mortality.

Imagine the difference for 60,000 women diagnosed with early-stage disease who will be saved from the toxic side effects associated with unnecessary treatment and the financially toxic side effects of lost income and the potential of permanently losing their jobs, due to disability as a result of treatment side effects.

Think about the piano teacher or masseuse who would lose their ability to work if peripheral neuropathy, a nerve disorder that can cause weakness, numbness, tingling, and pain, was the result of chemotherapy.

For now-retired commercial airline pilot Diane Sandoval, the Oncotype DX test saved a job she most certainly would have lost if she had chemotherapy. The cognitive impairment (chemo brain) and potential for neuropathy would have ended her career a decade earlier than planned, compromising her long-term retirement benefits and financial health, not to mention stealing the joy she found in her work. 

In the United States, there has yet to be a robust study on how breast cancer treatment affects working women. However, per a small study conducted by The Pink Fund in September 2017, 36% of the women surveyed nationwide reported losing their jobs or being unable to work due to treatment-associated disability. 

Not having to make extreme choices about treatment is why I am so excited about TAILORx and want to educate all women at risk for breast cancer—1 in 8 in the United States—to ask about this test.

Genomic Health currently estimates that only 6 in 10 eligible women are receiving an Oncotype DX test, and that usage shows significant regional variation across the country. That means 24,000 women whose physical and financial health may be ravaged by unnecessary treatment.

Another disturbing concern, according to an internal study conducted by one healthcare system is that there is some gender bias with female physicians ordering the test more frequently than male physicians.

My suggestion, regardless of the gender of your physician, if you are diagnosed with early-stage disease and your doctor does not prescribe the Oncotype DX, or says you don’t need it, get a second opinion from a physician of the opposite gender.

An even larger impact than the gender of the physician, was measured in large practices.  If the physician boss was not in favor or prescribing the test, those in that practice also did not prescribe.

Prior to the TAILORx study, the Oncotype DX Breast Recurrence Score Test was included in all major breast cancer treatment guidelines, including organizations such as ASCO, the National Comprehensive Cancer Network, the St. Gallen Consensus panel, the National Institute for Health Care Excellence, the European Society for Medical Oncology, and the German Association of Gynecological Oncology. With the robust TAILORx data now available, Genomic Health, which administers the test, expects the guidelines to be updated in the near future to strengthen the language around the Breast Recurrence Score Test. TAILORx represents data that is considered the highest level of evidence by all guideline and review bodies, according to Sara Chenault, senior director, Patient Advocacy at Genomic Health.

Women diagnosed with breast cancer need to be their own best advocates. Women diagnosed with early-stage disease need to demand Oncotype DX.

 
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