Help Protect Other Patients

May 25, 2018
By

I wish our lawmakers on Beacon Hill could walk in my shoes, even for just a day.  If they did, my guess is they’d make some meaningful changes to the way insurers treat their enrollees who suffer from chronic diseases.  And they’d do it expeditiously.

Fifteen years ago, I was diagnosed with Crohn’s disease. Ever since then, my insurer has made getting access to the proper treatment a living nightmare for me and my doctor.  I’ve learned the hard way that it’s just not their priority.

For years, I was forced to prove to my insurance company that medicines other than what my doctor had prescribed DIDN’T work, before they would cover the original prescription. In some cases, patients are forced to go through this several times with different medications.  It’s called step therapy, and it’s very common.

It’s also very harmful.  And it’s costly.

In my case, it took four years before I got the medication that actually treated my condition.

Immediately after receiving my diagnosis, my doctor told me about a new, highly effective drug that could be used to alleviate my suffering. However, because of step therapy, my doctor was forced to prescribe me different treatments—that didn’t work.

I was forced to take ineffective drugs for years. Each time I failed on various medications, my doctor would move me up to the next treatment, which would be successful initially, but then my symptoms would return with a vengeance.

Finally, four years after my diagnosis, the insurer agreed to cover the treatment my doctor had asked for all along. But, by then, the disease had wreaked havoc on my body. I experienced increased abdominal pain, fatigue, weight loss, and malnutrition. Without the proper, doctor-prescribed treatment, my Crohn’s disease became debilitating.

Although my doctor knew what treatments were appropriate for my situation, my insurance company forced me to fail on ineffective treatments before covering what was medically necessary.

Right now, Massachusetts lawmakers have a chance to reform the way step therapy is used, by approving language to rein in the process and make sure patients can get better access to the treatments they need.  The House should include this proposed language in its omnibus reform legislation.

The proposal would establish guidelines to help protect other patients from going through the harmful experience I did. Under the reforms, insurance companies would be required to be transparent and expeditious with their appeals processes, and medical providers could override step therapy when medically necessary.

As a patient who suffered for years under the current step therapy regime, I urge lawmakers to make it happen.

I should never have had to go through what I did to get the correct treatment.  I paid for insurance coverage so that I’d have access to medically-necessary treatments—when I needed them, not years later. But my insurance company completely overrode my doctor’s expertise, which ended up costing me and the insurer more money with additional trips to the doctor and pharmacy—not to mention years of unnecessary pain and suffering.

Patients with chronic illnesses such as Chron’s, arthritis, cancer, MS and many others, already suffer a lot.  Getting through the day can be challenging.

It should be the doctors and the patients deciding what medicines and treatments are required, not the insurance company. That’s the way things are supposed to work. When I am on the drugs I need, it is life-changing. I can be a productive member of my family and my community.

Patients in Massachusetts need to be able to get the right medicine at the right time—not four years late.

VeraMae Volk is from Lynn, Massachusetts and was diagnosed with Crohn’s disease in 2003.