A delayed insurance authorization adds stress for ill patients

The hand on the clock ticked to the next minute. As I looked at the timepiece, my hearing seemed to become hyperfocused. Despite being surrounded by beeping machines, multiple conversations, a fire alarm, and a person coughing, I could hear each second as it ticked by. That’s what it’s like when I’m waiting for an insurance authorization that I need to stay alive.

In this recent case, I was sitting with an IV, waiting for my chemotherapy to be authorized. I’d been having this sort of infusion every 14 days for the past four years. The infusion stops my immune system from destroying my red blood cells, platelets, and organs. I need it in order to live.

In September 2020, I nearly died from atypical hemolytic uremic syndrome (aHUS), a rare disease that caused me hemolytic anemia and multiorgan failure. For me, it responds only to an infusion of Soliris (eculizumab). Those infusions have been a lifeline for me ever since.

But here I was forced to wait. My insurance hadn’t changed since March 2023. So why did I have to wait an additional three hours for this medicine to be authorized?

Recommended Reading

June 6, 2024 by Shalana Jordan

Grappling with the cost of healthcare with a rare disease

Expenses and delays

Soliris is one of the most expensive medications around. When I started this medicine in October 2020, a single dose was priced at $20,000. Many of my nurses had never seen medicine so expensive. Some even politely refused to administer it because they were scared of being held responsible if something happened to it.

With U.S. inflation, my insurance is now being billed $84,000 for each dose of chemo. That price is settled around $27,000, but why has it climbed from $20,000 to $84,000?

Many fellow chemo patients were experiencing waits similar to mine — spending hours hoping for authorization and sometimes being sent home to come back another day, when insurance might give the OK to proceed. It’s a nightmare.

I also need forethought to check authorizations around the holidays. My next infusion is set for Jan. 1, but the infusion site is closed on New Year’s Day. I assumed they’d move me to the day before, Dec. 31. After past issues, I knew that insurance wouldn’t authorize chemo a day earlier. In four years, they never have. I asked the head nurse to check, and as suspected, the insurance refused.

Therefore, my chemo would move to Jan. 2, which would wreck my entire schedule. I like Wednesdays for chemo because I feel ill for 48 hours after treatment. Having it on Wednesdays means I feel better by Saturday and can have a good weekend with my family. We have trips and events planned around Saturdays. Moving me to Thursday treatments ruins that. To keep the treatment on Wednesdays, I’ll now have to wait an additional week, to Jan. 8.

I’m seeing on social media and in news articles that this issue is ongoing for many. And it’s not my only frustration with a large insurance company.

Too young to be sick?

In 2010, when I was 26, I was insured privately through a major insurance company. My doctor then suspected I had breast cancer. This ordeal involved two mammograms (the first was inconclusive), a biopsy, a lumpectomy, and 12 rounds of chemotherapy.

But authorizations for treatment became an issue. Insurance was covering only a portion of my care, so many times the authorized payment amount wasn’t clear. The doctors saved my credit card information as they worked with me as much as they could, setting up payment plans for the portions they suspected wouldn’t be covered.

We then received word from my insurance that I was basically too young to have breast cancer. They wouldn’t cover the two mammograms or any of my other care until I got a second opinion — from a doctor of their choosing. So the office charged my card the full amount of both mammograms. This decision was made after my lumpectomy.

Our bank account was emptied and put into negative funds. That included funds from a week of orders in my sales business, roughly $3,000 that I needed from customers. All because of this insurance company’s authorization policies. I completely went under and lost my business. All while going through chemotherapy.

I can’t help but ask: How much fighting and suffering is an individual supposed to endure? Why are we paying insurance premiums that many of us can’t afford, just to be told that insurers can refuse to authorize whatever they like? Why are insurance companies allowed to say what medical care we need or don’t? That should be a medical professional’s job, not an insurance company’s.

I understand people’s frustration. How can we bring about change?

Note: aHUS News 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 other 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 aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.