How I Took Charge of My Health Care When No One Else Would

Mrs. Nettie Turner, guest speaker at a recent CMS Town Hall Meeting on the QIO Program, is a 67-year-old Baltimore resident with 11 grandchildren. Below is her personal experience with the healthcare system. Mrs. Turner knew how to take action to get the health care she needed to control her asthma, but not every patient would have the skills or ability to do what she did. Her story highlights the need for a health care system that is more patient-centered.

In January 2011, I thought I was coming down with a head cold. I visited my doctor, however, and found out it was a bronchial problem related to my recurrent asthma condition.  The doctor treated me at the office but told me that I should get a nebulizer for home use. The nebulizer had to be ordered under my prescription drug plan so that it would be covered. I waited at home for the nebulizer to arrive, but it never did. In the meantime, I experienced difficulty breathing.

I decided to take charge of my health by contacting my drug plan, and they told me that they couldn’t send the nebulizer until my doctor submitted a prescription. I asked them for the nebulizer supplier’s phone number, so I could it pass it along to my doctor. Then I called the supplier to ask for their fax number, so my doctor could fax them the prescription. The supplier asked me for my doctor’s phone number and assured me that they would take care of the matter.  Again, days went by, and I didn’t receive my prescription.  I then called my doctor’s office to inquire about the delay. By this point, I was pretty irate. They told me that they would fax over the prescription to the supplier. After another delay, I called the supplier. Just as I was complaining to them, my doctor’s prescription arrived on their fax machine. Finally, I got my nebulizer.

Fortunately, I’m the type of person to take charge of a situation when things aren’t going my way. I volunteer in a local program for seniors, so I have pretty good advocacy skills and know my way around the health care system. I’m concerned, however, about patients who don’t know what to do in these situations and who end up waiting for necessary medications while their health declines. If I wouldn’t have received my nebulizer, I might have ended up in the emergency room, which is not a cost-effective solution. 

How can we improve this situation? We need to improve communication and coordination among healthcare providers, plans, suppliers and patients to ensure that patients receive treatment in a timely manner.  Particular consideration needs to be paid to patients who are blind or have a condition that makes it difficult for them to help themselves.  In short, we need to come together to make health care better and safer for everyone.