Okay, so I will transfer all of my patients who cannot get care because they can’t pay their copays to you, ‘and you can watch them suffer.’ That was how a heated discussion with a respected, compassionate oncology partner ended recently,as he begged me and our practice administrator to treat one of his patients.
The patient is an otherwise healthy, active woman of 68 with stage IVA non-Hodgkin’s diffuse B-cell lymphoma that was diagnosed in March. She has a Medicare Advantage HMO with a 20% copay for chemotherapy.The total cost of eight cycles of CHOP-R (cyclophosphamide, doxorubicin, vincristine, prednisone, and rituximab) at Medicare rates is $114,271, with $22,854 in copay broken into $2,856.75 per 3-week cycle. Since she had no copay funding, our staff was able to secure a copay grant from the Leukemia & Lymphoma Society to cover her for the first two cycles in April and May, helped by free pegfilgrastim (Neulasta) from our clinic stock. She then had to delay cycle 3 until we obtained a second grant from the HealthWell Foundation in July,when she was able to resume therapy after a potentially compromising 5-week delay.
She now has coverage for cycles 3–6. We are pending reapplication to the Leukemia & Lymphoma Society for a final copay grant to cover her last two cycles. We know that for best outcomes with a curative goal in non-Hodgkin’s lymphoma,it is critical to give the full dose on time, along with white-blood-cell growth factors for patients who are older than 65 or who are at high risk for developing neutropenia. The stress of having to delay 2 extra weeks between cycles 2 and 3 and the ongoing uncertainty about cycles 7 and 8 have pushed this patient and her family, as well as our physician and clinic staff, to the breaking point.
My recent experience with one of my own patients is just as harrowing. This patient is a remarkable 60-year-old woman, who looks 40 and has been under my care for stage IV breast cancer since 2003 with an ECOG (Eastern Cooperative Oncology Group) performance status of 0. She has done remarkably well after failing to respond to hormone therapy and capecitabine (Xeloda) and being placed on a once-every-3-week regimen of IV nab-paclitaxel (Abraxane) since July 2009, coupled with ongoing control of extensive diffuse bone metastasis, as well as osteonecrosis of the jaw, from her initial 2 years of IV bisphosphonate therapy. She feels so well on this therapy that she volunteers 2 days a week at our regional psychiatric institution, despite needing methadone for pain relief. We secured a 12-month copay grant last October, which covered her costs through June of this year. She has no means of additional funding for the IV therapy that has controlled her disease for over 2 years. We also have no clinic funding for copays, so she had to stop therapy this month.
I was able to give her 4 months of samples of an aromatase inhibitor and can only pray it will hold her until we can apply for a new copay grant this October or November. The foundation that funded her, Patient Access Network, is presently out of breast cancer copay funds, and although our coordinator calls the foundations weekly for updates,we cannot be certain there will be any funding for this patient going forward. In fact, we have been notified that the major breast cancer funds (Cancer Care Foundation, Patient Advocate Foundation, Patient Access Network, and HealthWell Foundation) were out of breast cancer copay funds as of July. The remaining fund for breast cancer patients, Chronic Disease Foundation, has a list of specific drugs it covers, which does not include nab-paclitaxel.
The Patient Advocate Foundation accepts applications only on the first 3 days of each month,so that patients who are diagnosed during the remainder of the month have to wait to submit their applications during the first 3 days of the following month—and then, as with all foundations, wait another 3–5 weeks for a response, assuming their disease and therapy are on the funding list. During these weeks of waiting, it is common for our office managers to get calls from patients asking, as one put it, “What are you going to do? Watch me die?”
These are just 2 of the 15 “copay-need” patients being seen in one of our practice’s six private offices, where we treat patients from across the socioeconomic spectrum. We provide professional cancer care for indigent and low-income patients in two California counties. The uninsured rate is 26%, and unemployment is 14%, but our ability to bring cost-effective, standardized, evidenced-based care to this population has provided an important alternative for those who lose or have no insurance. In the past, like many other practices, we were able to waive copays for poor patients because we had adequately funded care. But with the underfunding of community oncology care precipitated by Medicare’s Medicare Modernization Act (MMA) of 2003 and exacerbated by private payers, the low chemotherapy drug margins, and use of the prompt pay discount in average sales price calculations, we no longer have the margins to do so.
And now a new trend is emerging—there are a growing number of patients who have health plans with high deductibles or copays of 20% or more that they cannot afford. We are being inundated with calls from these patients and their advocates. Part of our response has been to offer them individual chemotherapy and financial counseling so that they are fully informed about their copay responsibilities under their health plans before they begin therapy.The terms of their copays are often a shocking revelation to them, but being informed upfront allows for them to investigate their options for aid from personal, family, and foundation sources.
We have also tried to implement steps at the practice and office levels to help us keep tabs of all our patients’ copay needs. The practice’s copay coordinator maintains the electronic grant status records, tracking the 55 grants she is following for a total of 37 patients across the six offices. Each office manager has access to those records and, in turn,documents the office’s copay grant applications and responses to them—and whether or not the applications were successful. In addition, we maintain a custom tracking sheet for patients who receive copay grants so that we can monitor their copay balance after each cycle of therapy to ensure that patients do not continue therapy beyond the limits of the copay grants.
There are specific pharmaceutical company assistance programs for some branded drugs, but if patients have MediCal (Medicaid), Medicare, or a Medicare Advantage HMO product, they are not eligible for them. Patients can get coverage from these programs only if they have no insurance, and there is no coverage from any sources for the much cheaper, generic chemotherapy drugs. In addition,for most patients and their families, finding these grant sources, understanding the terms, and completing the applications is difficult and time consuming, so our practice hired a staff member to handle the applications (Rajurkar SP et al. J Oncol Pract 2011;7:100–102).
We are doing our part and more in community oncology, but as the cases here illustrate, we are not succeeding on behalf of all of our patients. We need patient advocates, Medicare and private health plan officials, and our elected representatives to develop a comprehensive solution to appropriately support cancer patients in the same way that those with chronic renal failure and other chronic or curable high-cost diseases are supported. We also need to urge our elected officials to ensure that the current debt crisis solution does not include further cuts to the Medicare payment system for cancer care. Physicians who have devoted years of their lives to bringing the best science to relieve suffering, prolong lives, and improve cure rates cannot realistically be expected to watch patients with curable and palliative cancers falter in their progress when effective care is available but unattainable.
Some years ago, when I was in Washington, DC,to speak to our representatives about the deleterious impact of the MMA, a prominent senator’s staffer told me “there would be no adjustments in funding until we showed them bodies in the streets.” Well, Senator, you can now see those bodies mounting.It is a sad time when clinicians are being asked to monitor patients’ cancer progression rather than their progress against cancer.