Patient Advocacy: A Physician’s Perspective

February 2012, Vol 3, No 1

I never thought it would happen in the United States, but it has. We are critically close to running out of some chemotherapy drugs. It came as a shock to all of us, when we realized how severely the problem of drug shortages has started to affect our patients. The following case is but one example.

Drug Shortages: Brenda’s Story

My patient Brenda was diagnosed with the BRCA1 gene mutation and was treated for breast cancer in the 1990s, with a lumpectomy and radiation therapy. Brenda was in remission, until she was diagnosed with stage IIIC ovarian cancer in May 2006. She could not tolerate chemotherapy given directly into her abdominal cavity.

By November 2006 she had completed 6 cycles of standard aggressive chemotherapy. Her ovarian cancer required abdominal surgery in May 2009, followed by more chemotherapy. By March 2011, Brenda had started treatment with a fifth chemotherapy drug, doxorubicin (Doxil). Her disease was responsive to Doxil, which controlled her disease and symptoms, with minimal side effects for 6 months. Brenda is one tough patient.

However, later in 2011 I had to tell Brenda that Doxil was no longer available, and that her treatment would need to be changed. She had no option but to return to drugs she had tried before. Brenda was mad, frustrated, angry, and dying for a solution to the drug shortage.

When Brenda started receiving Doxil, there was no hint that the drug would become unavailable. In 2008, 3 cancer drugs were in short supply; in 2011, 23 cancer drugs were in short supply. As a result of the Doxil shortage, Brenda and I have discussed that her life would likely be shortened.

As luck would have it, toward the end of January 2012, Doxil became available again, and Brenda received her first Doxil treatment on January 30, 2012. We hope that we would be able to maintain the same level of disease control she had previously with Doxil. This has been a medical roller coaster that runs the gamut of disease progression, treatment symptom control, unavailability of drug, disease progression, and drama—plenty of drama.

Policy Concerns and Patient Advocacy Network

Six years ago, I was asked to serve on the Board of Directors of Community Oncology Alliance (COA). I would sit in meetings and listen to very intelligent, motivated, compassionate physicians fight on behalf of patients with cancer; fight to make sure that the new treatments are available; fight that the new therapy could be paid for; and fight for access to care for the uninsured and indigent. I looked around the room and wondered, “Where are the cancer patients in our fight on their behalf?” The Board of Directors listened and directed us to create an advocacy program on behalf of COA, which we have named CPAN: COA Patient Advocacy Network.

CPAN is a network of patients and survivors who are identified through oncology practices. Every oncologist has a few special patients who want to help in that capacity. They want the opportunity to ensure that their cancer treatments are available for other patients who come after them. CPAN is providing an opportunity for patients who want to carry the message to other practices, to their legislators, to their senators, and to the media, to raise the awareness of the serious challenges facing community oncology these days.

f

In our inaugural meeting in February 2011 in Las Vegas we had more than 40 advocates from across the country. We have been trying to promote to patients the opportunity to work with their oncologists toward preventing the deterioration in cancer care. There is no stronger relationship between patient care and patient advocacy than the topic of drug shortages.

At COA and CPAN we are trying all routes to address the issue of drug shortages. COA has been represented at several congressional hearings, trying to make Congress members aware that in part it is the legislative policies that have gotten us into this situation.

The reasons for the generic drug shortage are multiple and complex. It relates to the way the government has priced the reimbursement for different chemotherapy drugs, as well as the manufacturers’ “race to be the lowest-cost producer.” The margin for profit has become so low that manufacturers elect not to produce certain drugs. From a business perspective, manufacturers will not make an older chemotherapy drug that costs so much to produce and for which there is little reimbursement. Rather, they would elect to produce a new, expensive drug that would produce a profit. Production delays in the manufacture of delicate toxic drugs and government regulatory panels do not make things any easier.

It is not clear if Congress understands the issue well enough to come up with a solution. At COA we are trying to explain the way we see the problem: it will take a pricing guarantee or some government oversight to ensure that these drugs continue to be made by companies that do a good job.

Getting Patients Involved

In the past 3 years, 199 community cancer practices have closed or have moved their operations to the hospital. Oncologists are being directed to hospitals, where the cost of patient care is much more expensive than in a private practice. One of our challenges is to try to help people recognize the value of a community oncology clinic, where you can get these drugs at a lower rate than in the hospital, and where the treatment is closer to the physician.

When patients are directed to receive their cancer care in an expensive hospital environment rather than in local clinics, this is bad for cancer care, and it is bad for the country. We want to make patients aware that our community oncology practices may not exist if we do not promote them and ask patients to help.

We are looking for patients who understand the issues, who have been through cancer treatment. We are particularly interested in patients who work in cancer clinics. We want CPAN to provide an opportunity for these patients to join with us and participate in getting the message out about current cuts, clinics closing, drug shortages, and the threat to cancer care in the United States.

How should you try to engage patients? Nobody does anything unless they are asked. We recommend that each COA practice identifies at least 1 patient who will serve as a point person for disseminating the information about current events, affairs, and bills to the other patients in that practice. That person is likely an administrator or a nurse working in the cancer clinic who also happens to have had cancer. It is common that 10% or 20% of the people have direct exposure to our cancer clinics, and many of them are already working in our clinics. This is a very valuable, untapped resource to advocate for the prevention of cancer care deterioration. The staff working in oncology practices who also happen to have cancer already get the message we need to spread.

Utilizing Resources the Smart Way

This is a very exciting time to be an oncologist. There are new treatments, new protocols, new regimens, and drugs that would have been impossible to imagine 5 or 10 years ago. So oncology has gone a long way. But we need to be smarter and better about utilizing the resources we have. For example, the amount of resources that are spent on end-of-life care for patients with cancer in intensive care units could be spent elsewhere.

There are ways that we can educate everyone, including physicians, that there is only so much in the pie. How much do we want to use on one program, and how much do we want to use on another? We could be much better at making these decisions. Patient advocacy is just coming of age. I see a time when the patient matters more than the finances. Trying to get that message out is our challenge.

Patients do a much better job than we oncologists do at getting this message out. A patient like Brenda and her story speaks more volumes than any physician ever could. We can help get the message out, but the story is all about the patients.

Related Articles