When Carrie Bilicki, RN, MSN, ACNS-BC, OCN, met a 60-year-old patient who had been diagnosed with aggressive endometrial cancer, she began to have a persistent albeit unconventional idea.
Bilicki, a cancer nurse navigator in Wisconsin at the time, recently had attended a lecture about a progressive treatment for this type of cancer that involved using a chemotherapy drug traditionally prescribed for ovarian cancer. The patients cancer had spread to nearby organs, and she had a poor prognosis. Bilicki convinced the physicians to try the alternative medication. Unfortunately, the patient faced another serious hurdle: The insurance company would not cover the cost of the medication because it was not the standard treatment. At that point, the woman seemed to face the unenviable choice between cancer treatment and financial ruin.
Although patients and providers would like to hope this type of extreme dilemma is the exception, the case may be representative of the near future for two reasons. First, as a 60-year-old, the woman was a baby boomer, and researchers predict the incidence of cancer will increase dramatically as this large segment of the population ages. According to a study published in the Journal of Clinical Oncology in 2009, the U.S. can expect a 67% increase in cancer incidence among older adults between 2010 and 2030.
Second, statistics suggest cancer treatment is becoming increasingly unaffordable, even for those with insurance who struggle to afford steep copayments. For example, The US Oncology Network a national group of about 1,000 oncology physicians who treat more than 750,000 cancer patients per year reported about half of the patients covered by a Medicare Part D plan have required copay assistance for oral chemotherapy for the past several years.
My message to my peers is to know the financial resources available because there are hundreds of them, Bilicki, who now is a clinical nurse specialist in breast services at Froedtert Center for Diagnostic Imaging in Milwaukee, Wis., said. There are foundations, specialty organizations and websites that tell us where to get help. If a patient does not have an advocate to link them to that resource, they will never know it is available.
For many patients, the desire to find a way to afford medication is driven not only by the fact that they have cancer, but also because the treatment options available today have increased the odds of survival.
By far one of the biggest advancements is more personalized medicine that targets cancer cells rather than traditional chemotherapy that did not differentiate between good and bad cells, Kim George, RN, MSN, ACNS-BC, OCN, a cancer program consultant from Wichita Falls, Texas, said. For example, now we can test biopsy tissue for specific tumor antigens and biomarkers and then prescribe treatments that target those antigens.
The advancements in cancer treatment also are reflected in improved survival rates. According to the Surveillance Epidemiology and End Results Cancer Statistics Review 1975-2009, for example, the 5-year survival rate for breast cancer among women in the U.S. between 1975 and 1977 was 75%. Between 2002 and 2008 that number jumped to 90%. During the same time periods, the 5-year survival rate for both men and women with colon cancer has increased from 50% to 65%.
Another major advancement has been the increase in availability of oral chemotherapy and biotherapy, George said. It has shifted the care setting. Years ago, the majority of cancer patients received IV infusions, and now more patients can take their medication orally at home. It is wonderful for convenience, and it is also less painful.
However, George said, reimbursement is not always a given with oral chemotherapy. A lot of oncology medications are given off-label, which means that the FDA has not approved a drug for a specific diagnosis, so it may not be covered by some insurance policies, she said.
The art of navigating the path to financial assistance for cancer medication is not simple, and organizations such as The US Oncology Network, based in The Woodlands, Texas, have hired professionals to help patients connect with funding resources and launched the OncologyRx Care Advantage pharmacy in 2006. Nurses in the network can refer patients to Care Advantage staff who help them apply for financial assistance.
The types of drugs used to treat cancer today are definitely more expensive than when I started working in oncology almost 30 years ago, said Lori Lindsey, RN, MSN, NP, OCN, a clinical services program manager with The US Oncology Network. Multidrug regimens, including oral targeted therapies, can sometimes cost $30,000 for a round of treatment, although the use of these drugs has markedly improved outcomes and increased survival for some diseases.
For patients who are uninsured, the best option is to apply directly to the drug manufacturer for patient assistance, said Meg Asher, a patient access coordinator/patient advocate lead at the Care Advantage pharmacy. When we learn that a patient is without insurance, we notify the doctors office and send a manufacturers application to them for the patients use, Asher said. Under these circumstances, we will not be the dispensing pharmacy; the manufacturer has their own specified pharmacy that will service the patient.
Even those who are insured under Medicare Part D often require assistance because the copayments can be thousands of dollars, Asher said. For these patients, the Care Advantage advocate team helps patients connect with various foundations that provide copay assistance in the form of grants. Some of the foundations assist patients who suffer from a specific disease, while others help those who are taking a specific drug for a disease.
While some facilities have staff trained to help patients find financial assistance, this is not always the case. For these patients, one resource is the Patient Advocate Foundation, a nonprofit organization with case managers who help patients with life-threatening illnesses to maintain financial stability.
When I was a hospital nurse, I honestly didnt know about a lot of the resources available to help patients after they left my care, Pat Jolley, RN, the clinical director of research and reporting at PAF, said. Many people have never had to ask for financial help in the past, and they are unaware that there are options. If they are newly diagnosed, we try to educate them about the likely expenses down the road to help identify potential problems. In my experience, when patients contact us saying they cannot afford one thing, it is usually just the tip of the iceberg.
For example, PAF assisted a 62-year-old woman with breast cancer who was insured, but she was having difficulty scheduling her needed mastectomy because of outstanding medical bills. She was living on Social Security disability payments, and her insurance did not cover surgeries, scans or tests. The woman received a bill for $50,000 that included the cost of previous care and several office visits. By negotiating with the hospital and the providers, the PAF case manager was able to reduce the bill to a total of $950 and also facilitate the scheduling of her mastectomy.
For Bilicki, one of her personal goals is to encourage patients to consider the financial aspect of their cancer care before they decide to pursue a particular form of treatment.
Nobody wants to talk about their financial state, and I think far too often patients suffer in silence rather than saying that they are having trouble with copayments, so what I do is proactively tell them about some of the resources, Bilicki said. Just because they have insurance does not mean they will have resources to afford the costs, so I empower all patients right off the bat to proactively seek out assistance if they need it.
After patients have been diagnosed with cancer, Bilicki encourages them to learn about the resources at the American Cancer Society, which has patient navigators trained to help people connect with financial resources. She also tells them about a group called Patient Resource LLC, which has a website and a patient magazine that includes national, state and local resources available for financial assistance.
In the case of the woman with endometrial cancer who could not afford a medication that was not covered by her insurance, Bilicki helped her apply for the drug manufacturers patient assistance program. Based on her income and medical necessity, she qualified for full assistance. She was on the medication for 15 months, and, despite her initial grim prognosis, the cancer has been in remission for the past five years.
I can always remember the tears and fear in their eyes when I first meet patients, and each time it feels like Ive won the lottery when I help them secure the treatment they need, and they start smiling again, Bilicki said. Part of my big mission for my colleagues is to advocate for these patients so they do not miss out on options that can change their lives.