Monthly Archives: July 2017

Managing Medications Part 2: Cost/Assistance


Once you are diagnosed with rheumatoid arthritis (RA) and/or other autoimmune (AI) diseases you will quickly become overwhelmed with the cost of medication treatment regardless of payment status unless you are independently wealthy. In this article, I hope to give you some practical advice to help you manage those costs. There is help out there, but you need to be a detective. It isn’t always easy to find and there are plenty of scammers waiting to take advantage of your venerability, lack of knowledge about patient assistance, and capitalize on your fear.

The most extravagant cost in the treatment of RA or other autoimmune disease are the injectable biologic and infusible chemotherapy agents. The cost can be upwards to $10,000 and $30,000 per year on average, often costing thousands in co-payments. Currently, my Rituxan treatment is $16,000 per infusion for four infusions per year costing $64,000 per year which is three times my Social Security income. Without assistance from the foundation for the oncology office where I receive my infusion on my Medicare co-pay, I could not afford this treatment. I praise God for this assistance because in seven years of seeking treatment for RA, Rituxan is the only drug to have a significant impact on my symptoms.

If you have commercial insurance, the best place to start for co-pay assistance is the website for the medication and/or the drug manufacturer of the drug you have been prescribed. Often, they have co-pay assistance cards with online applications or applications you can print and send to your doctor. Sometimes the doctor will hand you a co-pay card or brochure in the office, but that may not always be the case. Do your homework. I used these cards when I was commercially insured when prescribed both Enbrel and Humira for a significant cost savings. If you are underinsured, there may be a different program to get the cost of your drug covered. Don’t stop at the discount card program, but look deeper or talk to a customer service representative to see if there is an assistance program for you. I was able to get my Orencia prescription at not cost to myself because I was underinsured and qualified for a mail-order prescription program directly from their patient assistance program.

Medicare patients will often find themselves not eligible for drug discount card or manufacturer assist. You will need to read the fine print on the card or on the manufacturer website to verify coverage. Should you not be eligible for assist on your first inquiry don’t give up. As I stated in the paragraph above: search the manufacturer website and/or call customer service and ask if there is a payment assistance program for you as a Medicare recipient. Sometimes these drug manufacturers have foundations to help with drug costs for Medicare patients. Genentech provided my Actemera injections free of cost for a year while I was on Medicare because I met their income guidelines and was persistent in searching for help beyond the initial offering.

Uninsured patients may have a more difficult time finding coverage for injectable or infusible drugs. Some states have extended Medicaid coverage that may help, but the majority do not. In my home state, of Oklahoma, you have to be so far below the poverty line you are practically homeless to get Medicaid only benefits unless you have a qualifying illness such as renal disease requiring dialysis or certain types of cancer. RA and other AI disease are not covered. Still, follow the recommended advise above because drug manufacturers will often have foundations to cover the uninsured but it is rare as the Affordable Care Act requires some type of health care coverage.

Beware of drug assistance programs that over broad percentages off your total prescription cost or offer to help you find the aforementioned assistance programs. Many of these sites look free but they will charge a recurring fee on your credit card and are nearly impossible to get out of without cancelling your card, stopping payment at the bank, etc. I personally do not recommend these because if they are legitimate, they most likely will not cover the cost of injectable or infusible drugs but are reserved for commonly prescribed oral prescriptions.

If you find you can’t manage the overall cost of your co-pay or find yourself uninsured and need help, please check the following websites. These are ligitamate help sites; however, given the time of the year you seek assistance, they may be out of funds for your disease or medication. Check back periodically or speak with a patient care advocate for an estimate of when they will receive funding or if the program is being cut.

  • The Assistance Fund –
  • PAN Foundation –
  • Caring Voice –
  • Patient Advocate –

As of July 28, 2017, the following websites offer assistance for the medication listed:

  • Enbrel  –
  • Humira –
  • Cimzia –
  • Xeljanz –
  • Orencia –
  • Remicade –
  • Actemera –
  • Rituxan –

In addition to these tips, do always check with your pharmacist to see if they are aware of any patient assistance for medications. Your pharmacist may not be able to help you with injectable or infusible medications for RA, but he/she may be able to direct you to assistance for other oral medication supporting your autoimmune diagnosis. For example, during a time I was underinsured my pharmacist helped me get a very pricy anti-depression medication through the $4/month program at Wal-Mart.

I also receive “Extra Help” on my drug costs through Social Security. Depending on your income and expenses, you may receive a certain percentage of help. Although I receive 20% help on my prescription costs in combination with Medicare, this qualification eliminates the donut hole which is a substantial cost savings! When discussing this with other Social Security recipients, I find they do not know about this help. You can check it out at This webpage will also help you find your state advocate for helping you determine the Medicare Part D program during the enrollment period that covers the majority of your drug costs and it is completely free.


Managing Medications – Part 1: Rx & Refills


When you are chronically ill, managing medications can be a chore. Fatigue often plays a part in brain fog which makes it difficult to manage multiple prescriptions that you take routinely and as needed. Often it can seem like a chore keeping up with refills and the dosing regimen. Having a system that works for you is essential to preventing accidental missed doses and over dosing or running out of medication.

A good way to routinely get your refills that works with your prescribing physician(s) is needed. Many doctor offices request that you have your pharmacy fax the refill request while others ask you use their online patient portal (patient website) while others require a phone call to the office and/or leaving a message on the nurse phone line. If you obtain medications by a mail order pharmacy, you will be required to follow their rules for refills which may require mail in forms, 90 day prescriptions, paper prescriptions.

Who knew getting a refill could be so complicated, right? The game changer here is prescription medications that require a paper prescription. These would controlled substances. Depending on the type of controlled substance, your physician may be limited to a 30 day prescription at a time with no refills and required to send the paper prescription with you to the pharmacy vs. faxing or calling in the order. You will be required to maintain routine office calls to continue to receive this type of prescription.  If you take a medication for pain that is on the controlled substance list, such as Lortab, you will have to coordinate with your physician office how to manage subsequent prescriptions of the same drug.

As for non-controlled drugs, ask each medical office what their preferred method for refills is to cut down on confusion and frustration. Since I have multiple specialists, I started out by writing a note like, “Pharmacy to fax refill” in my address book. Now that I have transferred my address book to my smart phone, I write the note in my contact list and it serves as a quick reminder to ease communication for timely refills.

I cannot stress the importance of using ONE pharmacy! There are patients who are addicted to prescription medications who use multiple pharmacies in order to hide that they fill multiple addictive prescriptions. Sometimes, people don’t even realize the danger because they use the pharmacy closest to the prescribing physician office for convenience and/or they use several pharmacies in their home town.

Polypharmacy is a term used to describe the practice of taking multiple medications, usually more than 5 prescriptions a day.  Most of us with chronic illness fit that label. When you take a lot of medications, it is a very dangerous practice to use multiple pharmacies as pharmacies check your current medication list against any new prescription for drug interactions and known allergies. There are MANY medications that can be dangerous, even life threatening, when taken in combination!

With the opiate addiction problem in the USA there many states are adopting legislation for pharmacies to share your medication list in a state database so you can’t abuse prescriptions. Sadly, using multiple pharacies even if you are not addicted to prescription medication can get you labeled as someone who is a “drug seeker” as this practice is common among addicted patients.

I personally use a pharmacy that has a drive through located in my home town. I like the drive through because during cold and flu season or an outbreak of infectious disease, I am more protected from illness in my car vs standing in line inside the store. For those of us that are immunocompromised, it is essential we stay away from crowds of sick people. I also know my pharmacist and feel that I can ask him anything about my medication regimen. It is important that your pharmacist have time to consult with you so that you understand your prescription(s). So, in chosing a pharmacy be sure to consider your immune status and think about those pharmacies that have drive through windows, home delivery, or mail delivery.

I hope you have enjoyed this first article on medication management. Be sure to look for the next articles in this series in the coming weeks: Part 2 – Cost; Part 3 – Med Box, Part 4: Injections, Part 5: Infusions.