Cancer Treatment Support

By  0 Comments

Every cancer patient has a unique story and a wide range of significant challenges. For too many, one of the greatest challenges is the financial burden of treatment.

Judy Masonbrink, mother of three and retired counselor, has a rare form of cancer called Extramammary Paget disease, or EMPD. Because her cancer is so rare, there has been less clinical research devoted to it than to other, more common types of cancers. Finding the right treatment and gaining access to it has become a huge challenge.

“It’s an emotional rollercoaster,” Judy said while sharing her story. Judy’s daughter, Abbey Masonbrink, is a pediatrician and advocate for her mom. Dr. Masonbrink has spent the past two years communicating with insurance companies, pharmaceutical companies and Judy’s oncologist in hopes of getting her mom the best possible care. Too many times she has heard the phrase, “I’m sorry for your inconvenience” while requesting a medication that could extend her mother’s life.

Dr. Masonbrink described the frustration of receiving multiple insurance denial letters, appealing the insurance denials through the oncologist, and waiting to hear if any progress is made. “All these systems are really disconnected. As a patient or a family, we want to be advocating, but most of it has to be done by an oncologist, and every day her cancer is spreading.” The Masonbrinks’ story is just one of many examples of a family trying to navigate the extremely convoluted health care industry.

So, what can be done? The following advice is from Dr. Masonbrink and several experts in the health care system.

Talk openly with your provider and care team.
It is critical that you communicate openly and honestly with your doctor and care team about any financial challenges you are experiencing. A financial advisor can help discuss the options available including screening for insurance, community resources, payment options and financial assistance.

Appoint a cancer patient advocate.
“An advocate directly supports the patient to assist them with the administrative tasks associated with a diagnosis. Embarking on the journey to recovery requires a lot of energy. The added stressors of securing payment, navigating leave from work and health insurance can be overwhelming and potentially impede recovery,” said Dan Leong, senior manager, Cancer Control Strategic Partnerships, American Cancer Society. Dr. Masonbrink is an advocate for her mom, but she believes that if you do not have someone in the family who is knowledgeable about the process, you should appoint someone to represent you; “You need a patient advocate, whether it’s a family member or an actual patient advocate,” she emphasized. Ask your insurance provider about advocacy programs.

No health insurance?
A patient’s care team can help patients explore possible insurance options such as Marketplace plans, Medicaid, COBRA assistance and disability coverage. Ask your care team about self-pay discounts, payment options and long-term payment plans. It is also recommended that you apply for your state’s Medicaid or county’s medical program and for SSI/SSDI. There is a network of hospitals, such as America’s Essential Hospitals and Hill-Burton, that receive federal funding and are able to offer free or sliding-scale treatments. Contact those facilities directly to start their applications and eligibility process.

Ask the drug company about other medication offers.
Some pharmaceutical companies and foundations offer copay assistance and/or free medications. The medication needed might be available at a discounted price or in a generic form at lower cost. Ask about preferred medications and patient assistance programs. Eligibility for these programs are determined using established federal poverty guidelines. There are also organizations that assist with the cost of prescription drugs or provide a small supply of medicine, such as Good Days, the Health WellFoundation and NeedyMeds.

Talk to your oncologist about writing a letter of compassion.
One of the first medications that Judy’s oncologist wanted her to try cost a small fortune. Her doctor wrote a letter to the pharmaceutical company explaining why Judy needed the medicine, and as a result, the pharmaceutical company provided the drug. This may not be an option for everyone, but it is certainly worth asking.

Fortunately, there are many resources in place to help cancer patients, but more support is still needed. By bravely sharing their story, the Masonbrink family brings additional awareness to problems with insurance and pharmaceutical companies. Dr. Masonbrink continues to advocate for her mom and for a better healthcare system.

“Honestly, the battle is never really won. Each victory feels like a huge relief, but the truth is that in my mom’s situation, we are continuing to encounter these roadblocks with each scan that shows her cancer is spreading. The solution needs to be realized at a much higher level than at the patient level,” Dr. Masonbrink said.

Judy is hopeful that research will eventually discover more options for herself and others who suffer from this disease. ■

Sources: and