Multiple Myeloma and The Skyrocketing Costs of Treatment

by Jane Ashley

Many multiple myeloma patients experience long periods of remission, but virtually every patient will experience a relapse. The good news is the newer therapies offer effective for patients who relapse. The downside is the cost and how patients can afford the life-saving new therapies.

Multiple Myeloma

Multiple myeloma has one of the highest costs per patient. Although only about 1 percent of all cancer patients have multiple myeloma, the cost of treatment over the course of time is inexplicably higher than for other type cancers that have metastasized to the bone.

Not only have therapy costs risen, costs for other services like outpatient services (imaging and diagnostics) and hospitalization have risen for multiple myeloma patients.

Newer drugs for multiple myeloma include:

Ixazomib (Ninlaro)
Elotuzumab (Empliciti)
Daratumumab (Darzalex)

Oral chemotherapy drugs like Ninlaro, Revlimid and Pomalyst are problematic, especially for patients on Medicare – oral therapy is covered under a separate prescription drug program with higher copays and a large donut-hole amount. Patients on Medicare or Medicare Advantage plans are not eligible for financial assistance from any drug manufacturers, including the ones listed.

Oral chemotherapy drugs may have a 25 percent copay that has to be paid when the drug is picked up at the pharmacy. The good news is that many cancer treatment centers or their dedicated pharmacy have access to foundations that cover the copay on oral chemotherapy drugs.

The good news is that financial assistance is available from a number of sources. Many cancer treatment centers have a social worker or financial assistance coordinator to help patients find the financial aid they need. Other patients will have to do the legwork by themselves.

The most important point that every patient needs to know is they should never give up on finding the financial help they need to get treatment. Ask your physician, ask your oncologist, ask the social worker, ask other patients – help is available for virtually every patient.

Patients who have traditional private health insurance will usually qualify for financial assistance from the drug manufacturer. Don’t assume that your income is too high. Providers of financial assistance recognize the extraordinary financial burdens that multiple myeloma patients face.

As of mid-February 2018, only the Leukemia and Lymphoma Society copay assistance program is open to multiple myeloma patients. If you need copay assistance, apply NOW.

OPEN for applications - Leukemia and Lymphoma Society 

The following organizations may have openings later in the year for multiple myeloma patients and will most likely have new funding at the beginning of 2019.

PAN (Patient Access Network) currently closed for myeloma –
Patient Advocate Foundation currently closed myeloma –
Good Days currently closed for myeloma –
CancerCare currently closed for myeloma –
Chronic Disease Fund currently closed for myeloma – 1-877-968-7233 press option #0

Medicare patients only will find help through the Healthwell Foundation. They furnish copay assistance for virtually all of the therapies used to treat multiple myeloma, including the newest drug therapies. Household income can be up to 500 percent of the Federal poverty level (adjusted for household size and the high cost of living areas). For a retired couple, this means that they can have an income of up to $82,300 and still qualify for help from the Healthwell Foundation.

A video of a discussion with multiple myeloma patients, doctors, patient navigators and social workers from The University of Arkansas for Medical Sciences on how to get financial help

Be pro-active for yourself. Even if you’re told that there is no help for you, go online and search. You may have to search through 3 or 4 pages of results before you find a foundation that still has funds.

For example, a WhatNexter patient with Renal Cell Carcinoma was told that no funds were available for her particular cancer for the upcoming fiscal year. She was frantic with worry and began her own search. She found The Assistance Fund that showed funds still available for RCC and called them. At first, the patient representative told her no funds were available. Our WhatNexter patient reasserted that the website indicated funds were available. It turned out funds were available, and she received the funds she needed.

WhatNexter "EJourneys" added this "My insurance didn't cover Emend, but I was able to get it at no charge through Merck's ACT Program:

When my port gave me a blood clot, I was able to get Xarelto at no charge through Janssen's Care Path program:

In the case of Emend, my chemo nurse told me about the program. I forget whether she gave me the paperwork or whether I got it online, but I had to supply a copy of my tax info to see if I qualified. When I did I was given a special number to call to order each pill packet, which was delivered via FedEx a couple of days before my infusion.

In the case of Xarelto, the patient advocate at my hospital registered me for the program while I was still an inpatient. I received a card and a support packet and had to show the card at my pharmacy.

My partner takes Premarin and was given a discount card by her nurse practitioner. I showed the card at the pharmacy, which now has the discount on file:
The discount cuts the cost roughly in half."

One of the helpful members of WhatNext is "Carm", she is a Nurse who specializes in end of life care, and women's cancers. She offered this tutorial on getting help from Needy Meds, she says "There is a website called Needymeds and if you go to the website and click on the word menu, then patient the middle of the page you should see search by diagnosis. Click on the C for cancer, then the word cancer and you will get a list of many national organizations that will help with finances. Once you are past the national organizations you can scroll down to your state and you can see what offers are available as well. Good luck."

Financial assistance is available to multiple myeloma patients. At the moment, only the Leukemia and Lymphoma Society has funds earmarked for multiple myeloma patients. Most cancer treatment centers offer financial assistance for newly diagnosed and existing patients. If you need assistance, today is the day to take action.

Do you have any helpful information to help with the skyrocketing costs of multiple myeloma treatment, or other cancer drugs? Please post them in the comments below. 

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