By Suleika Jaouad
When I blow out my birthday candles next month, I’ll celebrate being alive. But my 25th birthday will also mark a one-year countdown to the date when I will no longer have health insurance.
Like many, many other young adults who don’t have insurance through an employer, I rely on the insurance provided by my father’s job to cover my health care. But young adults are allowed to stay on a parent’s health plan only until age 26. So in one year, like many other young adults, I will have to figure out how to afford my own health insurance.
Still, I’m one of the luckier ones. Up to now, I’ve been fortunate never to have to choose between groceries, rent and medical care. But even with good health insurance on my parents’ plan, the cost of my cancer treatment has been overwhelming. Between co-payments, out-of-network costs, renting an apartment in New York City for my bone marrow transplant and the loss of two incomes (mine and that of my mother, who graciously took on the role of my primary caregiver), the out-of-pocket costs of my care have already amounted to tens of thousands of dollars.
Despite all of this, I’ve been reluctant to talk about the cost of my care with the people who provide it: my doctors. I get along well with my medical team and I have a tremendous amount of respect for them. But the idea of discussing my finances during a doctor’s appointment makes me uncomfortable. I’ve been asking myself why lately, and I’m still not sure of the answer.
The one thing I do know is that I’m not alone in feeling this way. A recent study that showed that while most patients want to talk with their doctors about the price tag of treatment, only about one in five actually do. The study, which surveyed about 300 insured patients treated at Duke Health and affiliated clinics in rural North Carolina, found that almost 60 percent of the participants had private insurance, but that the average out-of-pocket cost for patients was nearly $600 a month.
Why the hesitancy to talk about the steep price of cancer treatment? “Patients link cost to quality, and they fear that if they broach the topic of cost with their doctors they are going to get lower-quality care,” said Dr. Yousuf Zafar, an assistant professor at the Duke Cancer Institute and lead author of the research.
Maybe the most remarkable thing about the study is that 57 percent of the patients who did bring up their financial concerns found that the discussion helped reduce the cost of treatment. It’s a small but profound insight that suggests that communicating financial concerns to a doctor can be important in reducing treatment costs. Doctors may be able to prescribe cheaper medications or refer patients to hospital assistance programs. Hospital social workers and advocacy organizations like the Cancer Legal Resource Center, the HealthWell Foundation, the American Society of Clinical Oncologists and the American Cancer Society also provide resources for cancer patients who are struggling financially.
Whether we’re too embarrassed or shy — or worried that a discussion about cost might affect the quality of our care — it’s clear that both doctors and patients need to do more communicating. We talk about everything else, so why shouldn’t cost be a part of that conversation?
But no conversation between doctor and patient can magically turn an uninsured patient into an insured one. Doctors are just as helpless as patients when it comes to solving the problems of the uninsured. That’s why I joined the Leukemia and Lymphoma Society’s Federal Mission Day on Capitol Hill last week, where I spoke about the many challenges facing young people with cancer. Our legislators need to help us find cost-effective ways for patients with and without insurance to access quality health care. The steep price tag of cancer treatment needs to continue to be a part of the national conversation, not just the patient-doctor one.
The New York Times
June 13, 2013
Suleika has written about her life as a young leukemia patient in The New York Times Well section. Her essays are called Life, Interrupted.