Access to expensive medications has always been an issue for myeloma patients, particularly for Medicare patients taking oral medications. Each year, and this year in particular, January brings changes in healthcare coverage that cause uncertainty at best and problems at worst. This is the time of year for updates to insurance plan drug formularies – the official lists of which drugs are and are not covered and, if covered, at what percentage of the total cost. Patients who have rolled over their insurance policies from one year to the next may be surprised to find that a long-used medication now requires pre-authorization, or is covered at a lesser level, requiring a greater share of the cost on the patient’s part, or is no longer covered at all. Sometimes patients have enrolled in new insurance plans that go into effect in the new year, only to discover that the new insurer does not cover their long-used treatment. When pharmaceutical companies increase the wholesale price of a needed drug, all or part of that cost increase is passed along to the patient. Whatever the reason for the coverage change, the new year often brings with it hurdles – if not complete barriers – to receiving affordable treatment.
Added to the general state of healthcare anxiety in 2017 are sudden cuts or lapses in funding for patient co-pay foundations, leaving patients without the resources they need to cover their share of the cost for medications. The IMF InfoLine has been receiving an increasing number of calls from distraught patients who are suffering from “financial toxicity” related to their medications.
After hearing from many myeloma patients and support group leaders that some formerly active co-pay assistance foundations no longer had money to help patients, the IMF InfoLine’s Judy Webb set out to check with each of the major co-pay foundations to find out what was what. She discovered that at the beginning of 2017, three of the top foundations providing co-pay assistance to myeloma patients had no funds available for myeloma, while three others did.
Subsequently, as more patients were driven to the resources, allocated funds dried up. As of this writing, none of the foundations has funds for myeloma patients, but Judy’s research provided us with the following information:
• The presence or absence of funds for myeloma co-patients ebbs and flows without warning at the patient assistance foundations;
• Each foundation sets its own standards on income level to qualify for assistance;
• Help with co-payment varies based on which drug(s) the patient is taking;
• Patients who are uninsured may be eligible for more help than those with insurance;
• Patients whose healthcare is covered under a state or federal program may be ineligible for some forms of financial support;
• For Medicare patients, availability of assistance may depend upon whether the drug is covered under Part B (usually an infused drug given at the doctor’s office or a clinic) or Part D (for oral drug coverage);
• Patients with commercial insurance have wide access to pharma-sponsored support programs that pay for most or all of the patient’s out-of-pocket costs;
• Coverage for drug co-pay assistance may depend upon whether or not your doctor prescribed the drug according to the labeled indication.
Judy compiled an encyclopedia’s worth of information about financial support programs for myeloma patients and presented that information in late January on a conference call for myeloma support group leaders across the US. Her bottom line was that there are many avenues to explore, including patient support programs through the pharmaceutical firms, various search engines sponsored by pharmacies to help patients find the cheapest drug prices, co-pay foundations, the State Health Insurance Assistance Programs (SHIP) run by Medicare, and of course the treating physician’s office and/or the social worker at the hospital in your community.
Judy suggests the steps listed below if you are seeking financial assistance for your medication.
1. Call the patient support line of the pharmaceutical company or manufacturer of the drug you have been prescribed. Each company – and sometimes each drug within a company – has its own program, or may refer you to a foundation that has funds for their drug. Often this involves a telephone call by the patient or his/her representative to initiate the process. The pharmaceutical company representative will enroll the patient and perform an evaluation of benefits. If the first representative doesn’t seem able to help you, ask to speak with a senior patient advocate. Information and/or confirmation will likely be needed from your doctor’s office. The pharmaceutical company patient support telephone numbers are:
• Celgene – Revlimid® (lenalidomide), Thalomid® (thalidomide), and Pomalyst® (pomalidomide), all are taken orally: 800-931-8691
• Takeda – Velcade® (bortezomib), given subcutaneously or by IV: 866-835-2233; Ninlaro® (ixazomib), taken orally: 844-617-6468
• Janssen – Darzalex® (daratumumab), given by IV: 844-533-2792
• Amgen – Kyprolis® (carfilzomib), given by IV: 855-669-9360
• Novartis – Farydak® (panobinostat), taken orally: 844-327-9325
• Bristol-Myers Squibb – Empliciti® (elotuzumab), given by IV: 844-367-5424
2. Call or email the patient assistance foundations to see if they have funds for myeloma patients and what their requirements are. Some require a doctor’s prescription or confirmation before they will process your request. Below are the six co-pay foundations that have historically had funds for myeloma patients, but may be out of money at any given time.
• CancerCare Co-Payment Assistance Foundation: 866-552-6729
• LLS Co-Pay Assistance Program: 877-557-2672,
• Patient Advocate Foundation (PAF) Co-Pay Relief Program: 866-512-3861
• GoodDays (formerly the Chronic Disease Fund): 877-968- 7233
• Healthwell Foundation: 800-675-8416
• Patient Access Network Foundation (PANF): 866-316-7263,
These foundations calculate eligibility for assistance based on multiples of the federal poverty guidelines (usually 4 or 5 times the listed level). For your reference, see the table of the 2017 poverty guidelines for all states except Alaska and Hawaii. For Alaska and Hawaii, check aspe.hhs.gov/poverty-guidelines
3. There are websites and free apps for your phone or tablet that help patients find the lowest prices for their prescription drugs. They operate by pooling all the available information and finding the lowest prices each day, and refer patients to participating pharmacies with the best pricing and/or find drug discount coupons. NEVER PAY FOR THIS SERVICE! All legitimate entities offering this service are FREE:
While you may not be able to find a cancer therapy through these apps and websites – usually only specialty pharmacies can prescribe cancer medications – it’s certainly worth a try for the other prescription medications you use. If you get your myeloma medication through Diplomat Specialty Pharmacy, diplomatpharmacy.com or 877-977-9118, staff members there will provide assistance in trying to find third-party funding for your out-of-pocket drug costs. Pharmacists at cancer centers may also be able to help you.
4. In a category all their own are Needy Meds needymeds.org and Partnership for Prescription Assistance (PPA) pparx.org, non-profit organizations that help find available assistance programs or free drugs for those who qualify. The Needy Meds staff helps patients complete the application forms for assistance and works with physicians who must sign the forms. They also search for local prescription programs in each patient’s area and offer counseling and help with all aspects of Medicare and Medicaid. PPA helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
5. The State Health Insurance Assistance Program (SHIP) medicare.gov/Contacts/#resources/ships is a free health benefits counseling service specifically for Medicare beneficiaries and their families or caregivers. SHIP is an independent state-run program funded by federal agencies. It is not affiliated with the insurance industry. Patients who receive Medicare benefits should use SHIP to make sure they are aware of all available options for drug assistance and are choosing the best plans for their needs during open enrollment. SHIP also helps with appeals for coverage if Medicare has denied a claim.
6. Your hematologist/oncologist and the social worker at your cancer center can also help find co-pay assistance. Not only are they specifically trained to deal with drug coverage issues, in some cases the
co-pay foundation allows them to complete the required paperwork so you don’t have to.
The IMF and our InfoLine Coordinators are here to help with your myeloma-related questions and concerns. The IMF InfoLine consistently provides callers with up-to-date information about myeloma in a caring and compassionate manner. InfoLine specialists Paul Hewitt, Missy Klepetar, and Judy Webb can be reached at 800-452-CURE (2873) in the U.S. and Canada, or 818-487-7455 worldwide. Phone lines are open Monday through Friday, 9 a.m. to 4 p.m. (Pacific). To submit your query electronically, please email InfoLine@myeloma.org.