Navigating Insurance Requirements for Factor Can Be Stressful

Shellye Horowitz avatar

by Shellye Horowitz |

Share this article:

Share article via email

I got home from work and checked my mail. I had received another notice from an “impartial third party” stating:

Dear Ms. Horowitz,

We have received an inquiry from your insurance company and we have determined your treatment is medically necessary. You are entitled to 90 treatments in the next 6 months.


Impartial third party agency

A medical necessity

Every six months or so, my insurance company has to verify that my access to, and use of, factor VIII is medically necessary. I am happy to report that the letter I receive is always the same: a proclamation that my treatment is, indeed, medically necessary.

Challenging insurance denials

However, almost 15 years ago, I had an insurance company that attempted to deny factor coverage. They argued that factor VIII products fell under a clause of “pre-existing medical conditions that are cosmetic in nature and not medically necessary.” They denied a claim of over $20,000. As far as I know, my need for blood-clotting products isn’t “cosmetic.” It is, in fact, medically necessary.

I reached out to an attorney who offered to take my case pro bono. As my luck would have it, his wife developed acquired hemophilia during her pregnancy, so he could relate to my struggles. He wrote a few strongly worded letters, and not long after, I received something in the mail. It was good news: My insurance company reviewed my claim and determined that factor VIII was medically necessary.

I may have rolled my eyes, but I also thanked my lawyer profusely.

Diagnosis matters

I had a hysterectomy a year and a half ago. Factor VIII products were required before, during, and more than a month after the procedure due to possible hemorrhaging. Prior to the surgery, I was still considered a “symptomatic carrier of hemophilia,” which is a pretty controversial term among women with a hemophilia mutation who are in need of equitable access to treatment. My insurance company questioned the use of factor and sent back the hospital bills.

After months of going back and forth between the insurance company and the hospital, I noticed that my medical charts had been updated. My new diagnosis of mild hemophilia A allowed the insurance company to pay the hospital for the factor I used. Curiously, a man with the same factor VIII levels as mine would have been diagnosed with mild hemophilia A from the start and had easier access to treatment.

It’s all about the cost

It is no surprise that insurance companies challenge the use of factor products. They are incredibly expensive. In fact, they are one of the most expensive treatments on the market today. Yet, for those in need of factor products, access is critical for health and quality of life.

My access to factor VIII products has increased now that doctors have learned more about women and hemophilia. I’ve gone from using factor products for surgeries and significant accidents to frequent, on-demand use. When I started experiencing more spontaneous joint bleeds that were stimulated by activity, I moved on to prophylactic treatment. I hold my breath every time I refine my treatment plan, wondering if securing factor VIII products will be an insurance battle.

The need for continual access

Regular access to factor VIII products has changed my life. I am in less pain, have fewer injuries, and am able to be more active.

I am terrified by proposals to remove the Affordable Care Act, change the current laws surrounding preexisting conditions, or reinstate lifetime caps on insurance costs. Most people with hemophilia find the articles unsettling. We need access to expensive medications to live healthy lives. I can’t imagine going without factor VIII products.

We did not choose to have hemophilia. We were born with it. My blood sisters, blood brothers, and I need continual access to care because our lives depend on it.


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.


Leave a comment

Fill in the required fields to post. Your email address will not be published.