Learn How to be Your Best Advocate

I have not always been a brilliant advocate for my well-being. Sadly, I actually gave in to the conclusions of all the specialists back in 1979 that my disability after the car wreck was total. I’d never work again or lead a normal life.

Never be as quick as I was to accept expert opinions. I’ve previously told the story of my transformation when I put my trust in God’s hands. Today I have a fresh problem and example for you to learn from.

I have severe asthma. It has been nearly 100% under control for five years. Things changed in late January when our insurance coverage changed. I learned in February that the current insurance coverage rejected my two primary inhalers. These changes took effect with my 90-day refills in March.

My experience after the car wreck was that I often had adverse reactions to new meds. The greatest error in judgment on my part would be to begin two new prescriptions at the same time. If there was an adverse reaction, it makes it harder to figure out which medication is problematic. I have had some adverse reactions to new meds because of the autoimmune issues I discovered after the injury.

Learn from my mistakes: The best advocate you will ever have is you!

When I was told they required me to change two primary meds simultaneously, I immediately knew I was unwilling to start them together, especially meds so critical to protecting my life. So, I asked the pharmacy if I could pay full price (around $400) for a refill on one inhaler to give me enough time to know the change on the first one would work for me. He agreed.

Know When It’s Time to Advocate

The first problem presented twelve hours after starting the new inhaler. I began wheezing with every breath. It was so loud I couldn’t get to sleep at night. Desperate for a deep breath, I started using my emergency inhaler.

The effort to adjust to the new inhaler lasted one week before my first attempt to advocate for myself with my doctor’s office. The answer I received was that it was the same medication as the previous inhaler. There should be no problems with the change.

If there’s one lesson I beg you to take away with you after reading this blog, it’s this: There is no hope unless you find the courage to stand up for what you believe is true and fair.

After two weeks, I contacted the pharmacy to pay full price for the original inhaler. They had canceled the prescription.

Today marks several weeks of desperation on my part. Sleep has been elusive because of the noise screaming in my ear made by my wheezing. The shortness of breath is acute. There are roughly two weeks left before I lose everything that made me feel safe. The second new inhaler sits in the closet, waiting for me to make the change. Today I woke up knowing I’m the only one who can solve my problem. It needs to happen soon.

What would you do?

The facts I knew as an advocate for myself when I woke up on Friday of last week were:

• The new inhaler wasn’t working. I’d had no problems with the old one for nearly five years.
• The insurance company can make rare decisions to change their determination if directed by the doctor. Would my doctor agree to demand the original inhaler?
• There are only two weeks left before I have to make another major change in yet another medication inhaler.
• The pharmacist might know if there is a difference in the formulary on the two options.

Are you ever frustrated by the control the doctors, insurers, and pharmaceutical companies have over your life? I certainly was at that moment.

The doctor told me repeatedly the old and new drugs were the same.

Desperate for Answers

Of all the options, I called the pharmacy first. We discussed my symptoms, the changes to my health after starting the new inhaler, and my frustration that something was terribly wrong. If I learned anything during my 30+ years in commercial credit and business law, it was to follow the clues provided by “cause and effect.” The wheezing began 12 hours after I first used the new inhaler. It really didn’t take a rocket scientist to make the connection.

The pharmacist looked back and forth between the two prescriptions in my file and answered the question after only a few minutes of questioning. Yes, the drugs were the same formulary, but the new inhaler was only half the dosage of the original.

Think about what might happen if someone cuts your heart medication or blood pressure medication in half.

The doctor seemed surprised the dosage changed. They told me they sent a new prescription to the pharmacy. I drove into town expecting to pick up the stronger prescription. You won’t believe this, but I received a third new inhaler, and I will only have three days to determine whether it causes me any problems before I start the other new inhaler. I had paid dearly for a 4-week trial for the first change. Now, I will only have a few days to recognize any allergic reactions.

This Could Happen To You

Stockholder return drives insurance companies.

The owners push doctors and nurse practitioners (NP) to hurry to log more patient visits.

Pharmacies rarely question dosage changes made by a medical doctor.

For your health, question everything.

If you don’t understand something, ask questions. Be your best advocate.

Also, pay attention to “Cause and Effect” whenever something changes.

More Suggestions:

Make a list of all your questions.

Keep a list of all symptoms/side effects.

Add someone you trust to the conversation if you don’t feel you can communicate your concern appropriately.

Ask significant questions and ask for clarification if you don’t understand the answers.

If you aren’t getting answers that explain and resolve your concerns, seek a second opinion.

I chose the last suggestion and contacted the pharmacist after six weeks of total frustration and fear. Please don’t wait as long as I did! I still suffer from the demands of my childhood to not question voices of authority. Teach your child to question everything.

In the end, do what’s right for you and get the answers you deserve. Hope lies in your ability to advocate for yourself.

More Resources

Ten Steps to Being an Effective Self-Advocate

What is Self Advocacy

How to advocate for yourself