Published on January 8, 2020
- Financial resources are available after diagnosis and during treatment.
- Most health centers have financial navigators to help patients.
- Drug companies or foundations may offer grants or assistance.
Who can chronic lymphocytic leukemia (CLL) patients talk to about financial assistance? At a recent Town Meeting in Cincinnati, financial navigator Alison Mulholland, nurse navigator Amy Sheldrick, and Dave Kasanicky, who is living with CLL, discussed different options available to help patients with cancer-related expenses. Watch now to learn more about financial resources and support.
This program is sponsored by AbbVie, Inc, Genentech, Inc and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power in partnership with The Leukemia & Lymphoma Society (LLS), CLL Society and OHC (Oncology Hematology Care). Patient Power is solely responsible for program content.
As a CLL patient, I appreciate all you do for this community. I was diagnosed in January 2014. I am in watch and wait. I am an RN, wife and grandma - and 66 years old. I always recommend you to anyone that is diagnosed or needs help for a family member.
Transcript | How Can CLL Patients Address Financial Concerns?
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A lot of this stuff is expensive. FCR may be old school, but it’s not cheap. A day in the ambulatory treatment center is not cheap. These novel molecules that we’re coming up with; some of the price tags come in at $10,000, $12,000 and $20,000 a month. How do you deal with this? Well, you get a microphone –
That helps, and then it’s when all of the great foundations and even some of the drug companies can assist.
How do people get access to those? I mean we have people on the CLL support group on Facebook all the time saying; I have no idea how I’m going to come up with the co-pay.
They don’t because until you are diagnosed or have a loved one, you don’t know the resources out there because you’ve never had a need for them. Then, once you do have that need you have to connect somehow, either online or in your doctor’s office or with other patients to find out where the resources are and how to get signed up for them.
Do most health centers have some kind of liaison, the role that you provide, to assist patients?
O.H.C. does and in most of our offices—all of our offices—we have a financial counselor and we meet with all of the patients before they start treatment to guide them down this path, to help them get signed up to do the applications, to fax the papers in, to get what we need from the patients, to get them the grants going, or if the grants aren’t available then we go to the drug companies to see if they’re eligible for free medication.
Would it be safe to say that any patient who is dealing with a financial hardship should always ask the medical providers for assistance?
Always tell your doctor. Some patients don’t like to tell their doctor or nurse that they can’t afford something, but usually they are prescribing those medications because you need them. I always tell the patients to call us. If it’s too high for you, call us and let us know that so we can see what’s available.
Also, we have patients who think; oh, I have too much money. I’m not going to be approved. When you’re talking about $20,000 or $30,000 a month a lot of these foundations and programs from the drug company have high-set levels because especially in CLL we’re not talking six months of treatment. We’re talking 10 years of treatment, so it’s always good to speak up and ask those questions because there might be funding out there.
Excellent. Dave, I know that you took an extra rigorous approach to the financial side of your treatment. What are some tips that you can offer folks for managing the cost of treatment; making sure they have the right insurance in place, making sure that they have the right access to care?
Well, I’m not really aware of that. We were fortunate enough because I’ve been self-employed for 25 to 28 years, so all of our benefits come from my wife, who was fortunate when I was going through treatment to work for a very, very large corporation. They had plans from bare minimum to Cadillac, so we were fortunate enough at the time to sign up when I was diagnosed and obviously new enrollment came so we took the top, which is a good thing because I went through treatment. The bad thing was as soon as I finished treatment three months after that, they decided to eliminate her job.
I found out very quickly, and it’s not very good for the ego, that COBRA doesn’t allow you to back down. Where you end is where you pay. At that time our monthly bill was almost $3,000 a month. I had just gone through treatment. I worked for myself, so I wasn’t doing a lot of work. She was pretty much on unemployment benefits and it became very expensive. I found out last night that we actually could have reached out to get some of that COBRA covered. The thing I guess I will say to this is reach out to your financial navigators because they can find ways to pay for this.