The Importance of Early Comprehensive Testing and Retesting in CLL (chronic lymphocytic leukemia)
By Thomas E Henry III, MBA, RPh, CPh
One of the common concerns that I hear expressed when I interact with other CLL patients particularly those who are in a Watch and Wait Status is, “Will I be able to afford care?” With the three primary oral therapies each costing more than $10,000 per month there is reason to be concerned. I would like to minimize that concern as much as possible by discussing the options that are available.
Your first line of financial support is your health insurance plan. If you have an employer provided plan, you should review the options that you have available and select a plan with the appropriate level of prescription coverage. Many plans are listed as Bronze, Silver and Gold. Bronze plans sometimes are “stripped down” high deductible options which may not be appropriate for a CLL patient who is in treatment or is approaching the point of needing treatment. When you have open enrollment, you should weigh the options and try to estimate what your out of pocket costs could be if you factor in the prescription medication.
Some insurance plans do not have fixed prescription co-pays and instead hold the patient responsible for a percentage of the charges. These plans generally pay 80% of the cost and the patient is charged 20%. As we mentioned, current oral therapies all exceed $10,000 per month so patients would be responsible for at least $2,000 per month or $24,000 per year. There are not many people who can afford this level of expenditure. There is however help available in this circumstance. Each of the manufacturers of these drugs has a Co-Pay Assistance Program. This does require the patient and provider to complete an application and disclose some financial information. If the manufacturer approves your application, they will set a co-pay they believe that you can afford. For example, they may determine that you can afford $100 per month. Using the $2,000 value we stated earlier you would pay the pharmacy $100; the manufacturer would pay the pharmacy $1900 and the insurance would pay the rest of the cost or $8,000. Your provider and/or Specialty Pharmacy can assist you with the application process for this program.
In the event that you do not have insurance or if the medication that is ordered for you is not currently approved for CLL but is approved for other indications, then there are manufacturer sponsored Patient Assistance Programs that provide free drug. Again, there is an application required but there is no financial information needed. The manufacturer will however search to make sure that you do not have insurance or that the insurance company has denied coverage. If the reason for the denial of coverage is that it is considered “off-label” or being used for a non-FDA-approved indication the applications are generally approved quickly. Again, your provider and/or Specialty Pharmacy can assist you with the application process.
Another option is to participate in a clinical research study (CRS). In most CRSs, all drugs are provided free along with all other ancillary charges for laboratory, radiology, infusion centers etc. Clinical Research Studies generally compare a new therapy or approach to therapy to the current standard of care. In some studies, the sponsor of the study will require that patient insurance be billed for some services including the drug if they are in the standard of care arm of the trial. If you were put in a study and assigned the standard of care arm you could potentially still qualify for assistance in some way.
If all else fails, there are a number of foundations that provide support to oncology patients. In my organization, we maintain a current list of foundations (and their contact information) that have historically supported our patients and share this with patients who can then make contact to try to get assistance.
Not all oncology providers have the resources to assist with these programs so it is advisable to ask providers about their ability to assist with financial concerns when you are choosing a provider. Obviously, those organizations that specialize in cancer treatment will be most knowledgeable about the options I have discussed.
Thomas E. Henry III, is a fellow CLL patient and a Registered Pharmacist licensed in 23 states and a Consultant Pharmacist in the State of Florida. He serves as Chief Pharmacy Officer at Moffitt Cancer Center, in Tampa, FL, where he oversees inpatient, outpatient, specialty and research pharmacy services. In addition, he is the President and Senior Consultant of Burlington Consulting Associates a firm that specializes in hospital pharmacy management consulting.
Originally published in The CLL Tribune Q4 2018.
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