Treatment Coverage: A Survivor and Patient Advocate Q&A

Mesothelioma treatment can be challenging. Chemotherapy, immunotherapy, radiation and surgery can all have effects on your physical and mental health.

Covering the cost of mesothelioma treatment can add additional stress to your mesothelioma journey. We spoke with pleural mesothelioma survivor Michael Cole and Patient Advocate Danielle DiPietro of The Mesothelioma Center for their perspectives and guidance on how to access help.

Mesothelioma Survivor Shares Personal Experiences

We spoke with pleural mesothelioma survivor Michael Cole, who is also a contributing writer at The Mesothelioma Center at Asbestos.com. We discussed his personal experiences covering treatment for mesothelioma.

Q: What has your experience been in terms of covering treatment costs?

Michael Cole: There’s no doubt in my mind that the fact I have a good (read “expensive”) health insurance policy has made this trip a lot easier. Even with it, however, there have been times when we struggled to get the mesothelioma treatment I needed.

Getting the treatment you need for mesothelioma can be a real journey. It always distresses me when I see insurance companies refusing to pay for treatment that’s medically your best option.

It took us fully a year to get my SAbR/PULSAR radiation treatment at UT Southwestern in Dallas approved. It turned out that it was a dramatically successful round of treatment for me, and I doubt that I would be here without it. 

There have been times when I had to change specific doctors because the insurance would no longer cover the one I was seeing. 

Q: Has having to change doctors impacted your treatment?

Michael Cole: I currently see doctors in the Texas Health Network (my primary doctor and general health needs in Fort Worth) and UT Southwestern Dallas (palliative care and follow ups with the radiation oncologist). My oncologist is with Texas Oncology.

The thyroid specialist and blood disorder specialist I’ve recently started seeing are with Baylor, Scott & White, all in Dallas. Most of my early mesothelioma care was conducted at Baylor College of Medicine and M D Anderson in Houston, Texas. 

I’m sharing this to illustrate how complicated and spread out your mesothelioma care experience can become when you’re willing to pursue the best care possible for you. You have to be willing to go where you can get the kind of treatment you need. You may have to be creative and persistent to get it when you find it. 

Q: What mesothelioma treatments have you had?

Since 2015, I have had an extra pleural pneumonectomy and surgical procedures to remove recurrent tumors. I’ve also had chemotherapy using Alimta and Cisplatin and immunotherapy using Opdivo.

I’ve had SAbR targeted radiation therapy and SAbR/PULSAR radiation treatment.

I don’t know what’s next for me, but I want to encourage you to be willing to travel and be flexible. Be unwilling to give up. It’s not easy, but it’s worth the trip. 

How Patient Advocates Can Help You

We also spoke with Danielle DiPietro, a member of our patient advocate team. Danielle is a financial advocate, board-certified Patient Advocate and VA-accredited claims agent. She discussed how she and her colleagues help mesothelioma patients navigate coverage challenges.

Q: When mesothelioma patients call The Mesothelioma Center, how can you help them connect with specialists my insurance will cover?

Danielle DiPietro: Our medical outreach team has researched and met with mesothelioma specialists and centers of excellence across the country. When a patient would like to connect with a specialist for diagnostics or treatment, we’ll gather the patient’s insurance information and then contact the closest expert to where the patient lives. 

We’ll start with having the financial department verify that the insurance is accepted. If so, we’ll move forward with helping the patient secure an appointment in 7-10 business days. 

If it’s not accepted, we’ll look into the next closest specialists.

Q: If insurance won’t cover treatments a patient’s doctor recommends, what can they do? How can the Patient Advocates help them?

Danielle DiPietro: We’ll call the patient’s insurance provider and find out if it’s the specific drug, hospital or doctor being denied. 

If it’s the specific drug, we’ll contact the pharmaceutical company that makes this drug and find out what financial programs are in place. If that avenue doesn’t work we can contact the National Institutes of Health and find out if the treatment is being offered under a clinical trial. 

These are 2 options to ensure a patient gets the best treatment available.

Q: Can Patient Advocates connect patients to other resources that can help fill in insurance gaps? Are there grants available or financial aid?

Danielle DiPietro: Of course. 

There are discount prescription cards. We can evaluate specific financial programs pharmaceutical manufacturers put in place. 

We’ll research what programs the patient’s state has in place for cancer patients and caregivers. We’ll also contact the hospital’s social worker and find out what donations are available, for example gas cards. 

We’ll also evaluate if the patient can qualify for any social security programs, VA programs and legal help through asbestos trust funds. 

There are a lot of ways for a patient to receive help to offset travel and treatment costs. Working directly with a Patient Advocate can ensure that everything available is accessed, which alleviates a lot of stress for a patient and their family.