Advocate

Later this week I am sharing my story of step therapy at the Arizona House of Representatives. Here is my draft of testimony below. I have to get it down to 2 mins so about half of this will be cut out, but want to share with you so you know what going through step therapy is like as a patient.

Barby Ingle Advocating for CPP Rights

My name is Barby Ingle, I serve as a volunteer on the Board of Directors of the International Pain Foundation (iPain) and most importantly, I have been a chronic pain patient with multiple rare diseases since the late 1990’s. I am here today to support AZ HB2420 that will put patient protections on step therapy in place.

Through my efforts with the iPain, I am dedicated to empowering patients to become self-advocates and educating patients and public on the challenges chronic pain patients live with on a daily basis because I have had to learn the hard way that this is a necessity. I am a face of the 2.4M pain patients living in Arizona who know the challenges of access to proper and timely care, but I am here today speaking as a patient who has been through the step therapy 3 times in the past 11 years. Step therapy practices in many cases are unethical and take decision making away from prescribers who have had the benefit of examining the patient, reviewing blood work, test results, etc., and transferring these decisions to the insurance company representatives. The insurance representative making the decision, who may or may not be a doctor (in most cases not), is making medical decisions on my care or denial of care.

Similar step therapy protections have already passed in 22 other states. Now it is time to work on protections for Arizonians like myself who can be devastated in a denial or delay of care involving step therapy practices. I cannot stress enough how important it is to allow a prescribing provider, based on his or her professional judgment, to request a step therapy override determination from a health plan or insurer on behalf of a patient. Poor step therapy practices need to be limited to help eliminate the often-cruel practice, which denies access to critical life-giving medication for chronic pain diseases.

Personally, this has happened to me three times.

The first two times, I fought the ruling using my medical records and with my providers’ support and the insurance company reversed the decisions. However, other patients are not so lucky. In my case, I had already tried all of the medications that the insurance company was willing to pay for. I had documented records stating my reaction to each of the medications. This process can be overwhelming, detrimental to your health, and time consuming if you have not already tried the medications they are now requiring. Even for me it took two months of calls, paperwork, and appeals to achieve a positive outcome. When you have a chronic condition, this fail first policy will force the patient to prove to the insurance company that another, often less effective treatment has failed to work before allowing them to move onto another option. In some cases, including mine, the patient has been on the correct medication for years when they receive their notice that they must try a less expensive, often less effective medication. This undermines the patient-provider relationship that is vital to assuring the best medical outcomes for the patient. Usually, a patient can tell immediately whether a medication is working or not and they should not be forced to stay on medicine which does not relieve symptoms, or is causing the further breakdown of a person’s health.

These Bard BC markers are in my breast to watch other areas of concern.

In my most recent step therapy experience, I was diagnosed with PALB2-var breast cancer I was told that my insurance would only cover was a full mastectomy because my tumor was to small. I held off on such a radical option and at my next scan, 3 months later, the mass had grown large enough that they could do a lumpectomy. Insurance covered the procedure and I was finally able to undergo the less invasive procedure. It seems a bit extreme that insurance would pay for a total mastectomy first, but in the long run it would save them money, with providing 1 surgery vs multiple, while permanently changing the quality of life for the patient mentally and physically (me).

Applying step therapy protocols rigidly to a chronic care patient is not in the patient’s best interest and simply creates undue challenges to pain patients. This practice is especially hard on pain patients who are women, minorities, and economically disadvantaged patients like myself. Studies have shown these groups are most affected and are either disproportionately under-treated or go untreated for pain. We must urge insurers to reduce health disparities in our communities through policies that protect the Arizona patients. In conclusion, I support AZ HB2420.