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Dear Insurance Companies, Here Are 6 Reasons I Could Not Make It to My Doctor's Appointment

Many of you may be aware of the recent admission by a former medical director at Aetna. He stated he did not review patient medical records before approving or denying a claim.

In case you missed it, according to a CNN report from February 12, 2018, a young man has filed a lawsuit against Aetna after they refused to preauthorize an infusion that he receives to treat common variable immunodeficiency (CVID), a rare immune disorder.

Aetna has rejected his allegations, claiming the young man failed to comply with their request for blood work. The young man became a new patient with Aetna in January 2014 after being insured by Kaiser. However, when this young man’s treating clinic asked Aetna to preauthorize an infusion in November 2014, Aetna said they were obligated to review his medical record. They saw the young man’s last blood work had been done three years earlier. Despite being told he needed to do the blood work, the young man did not go in, and a few months later, he became extremely sick and ended up in the intensive care unit with a collapsed lung.

I was diagnosed with Pompe disease in 2015. According to the National Organization for Rare Disorders (NORD), Pompe disease occurs in 1 in every 40,000 births in the United States. This story got me thinking about the reasons why I couldn’t see doctors in a timely manner, or why I didn’t make it to a doctor’s appointment. Here is my list:

1)I have received some of my care at the Cleveland Clinic, and if you have ever tried to schedule an appointment with a specialist at the Cleveland Clinic, you know it could be three months or more before they can get you in. Pompe has compromised my respiratory system, and colds can quickly turn into bronchitis or pneumonia and a hospitalization for me. I called to make an appointment, and when the operator saw that I have a rare disease, she said, “You need to see someone who is knowledgeable about your condition, so I can schedule an appointment for you in February.” It was November.

2)There have been times when I had a doctor’s appointment scheduled, but was sick the day before or the day of the appointment, and had to cancel. See number 1.

3)Sometimes I rely on my husband, family, or friends to transport me to appointments. Public transportation or a taxi is not always an option, particularly when you have mobility concerns.

4)Because of the effects Pompe has had on my body, which include muscle wasting, I have not worked in two years. At my last job, I was a contractor, so I did not accumulate vacation time or sick time. This meant if I took time off, I didn’t get paid.

5)When you have a rare disease, finding a doctor who is knowledgeable can be difficult. See number 1.

6)Oftentimes I worry about the cost of a doctor’s appointment and whether insurance will cover it. There have been a few times where my doctor or nurse advised me to go to the emergency room, but I waited because I was concerned about the cost.

My point in creating this list is that sometimes there are valid reasons why patients don’t see their doctor or make appointments in a timely manner, and medical professionals and insurance companies have to take this into consideration. Patients with rare diseases, chronic illnesses, and disabilities often have a set of unusual circumstances that can affect their daily lives. Sometimes, managing all of my doctors’ appointments feel like a full-time job.

Beginning in January of this year, my insurance provider began asking for additional information from the hospital before they will pay for claims related to my bi-weekly treatments. Each treatment costs $70,000. I have received this treatment for more than two years, and my health has significantly improved. My insurance provider has always covered my treatment with claims filed with the corrected medical billing codes, but now they want more information. While my doctor is happy to provide the requested information, I am still concerned about our health care system. It seems as our insurance premiums go up, it becomes more difficult to navigate insurance policies, and these companies seem less and less consumer-driven.

What are some of the reasons you were unable to see a doctor in a timely manner?

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