The healthcare system is complex, fragmented, and costly. People (patients and caregivers) are caught in the middle and struggle daily to make sense of a convoluted system that works like no other service industry we utilize daily. So, how does the average consumer act when their health insurance company says a medication, a diagnostic test, or a procedure is DENIED?

In my view, getting people – you and me – have to get involved in the processes so we are part of the process of working to prevent chronic conditions or manage them once they occur. To do this, we have to:

• Educate people on how the healthcare system works from their standpoint
• Stress the importance of their involvement – it is their healthcare. Encourage them to ask questions and raise challenges they are facing. Don’t settle!
• Let them see the actual cost of the medications, tests, and diagnostic procedures being recommended. Why are they needed? Will it change the situation or make a difference? What will happen if I don’t take the medication, get the diagnostic test, or have a procedure the doctor recommended? Informing the person with information is critical so they can make an informed decision.
• Tell them the actual costs, what these things will cost, what they will have to pay, and if there are patient assistance programs to manage costs. Our health care insurance shields us from the costs, and as a result, we don’t question the benefits, risks, or costs of what is ordered.
• Let them know the cost of diagnostic tests they are requesting and why they might not need them.
• Explain in plain language how their health insurance works and how they can learn to manage their benefits/costs.
• Talk to them about their lifestyle and habits (good and bad) and how they impact their health. Most people don’t worry about their health until it affects their lives with a disease or injury. Let’s make health and healthcare a priority for everyone and not wait for the emergency. We need to think more about prevention to decrease risks and prevent chronic conditions from occurring.
• Make sure you check bills from any provider, hospital, or pharmacy. If you get a bill without explaining the services provided, ask for an itemized bill to see what was done. Billing mistakes are frequent, and you can end up paying for items that were not done.
• Follow up and ask questions when services are denied. Don’t settle for NO.

Who would do this type of education, and when should it start?

This is the million-dollar question! Healthcare is set up for the stakeholders in the system, not for the people who use the system. If we want an inclusive, caring system that serves the interests of individuals, families, and communities, we, the consumer, must be involved to ensure we are part of the team.

The system is not coordinated, fragmented, or costly; most of the time, it is not friendly. That is why it is up to everyone, doctors, nurses, pharmacists, social workers, health system leadership, insurance companies, politicians, and most importantly, people (you and me), to work together to change the current system into a system that works for those who utilize the system to meet the CONSUMER’s goals.

Don’t go into the healthcare system alone. Find a trusted family member, a friend or hire a private advocate to help you. Take them to your doctor’s appointment. Have them on a call with you to talk to your insurance company. Having another set of eyes and ears and someone who is objective is important. You don’t always have the perspective or time to evaluate and investigate a problem when sick or injured. Having a family member, a trusted friend, or a paid private advocate can significantly help you as you proceed on your journey. Don’t try to go it alone.

A real case scenario that I recently experienced

I was talking to my doctor about a chronic condition I have been dealing with for some time. She said that she wanted to start me on a new type of medication that is helping people with my condition – but it was expensive. Other drugs we have tried have not worked – but this new line of drugs is up-and-coming. She has a few patients on them, and they are doing well.

She went over the medications, and I said I wanted to try them. She said let me submit it and see if your insurance company will cover the cost. She sent the order to my Pharmacy. In turn, they put it through my Pharmacy Benefit Company. I got a call from my pharmacy that the medication was DENIED. Do I still want them to fill it? I told the pharmacist tech to let me discuss it with my doctor. I let the doctor know, and she said she would try another drug that focused on cardiovascular risk factors (which I do have), but it was also DENIED. The doctor called me and shared she just read about another new drug in this category. She said she would put it through. A few days later, we learned it was again DENIED!

We were both baffled, and I was disappointed. What was most frustrating was that the Pharmacy Benefit Management company did not communicate why the treatments were denied. I never received any denial notices, and my doctor did not know why the medications were denied. As a nurse case manager, I and my doctor should have received notices of denials and what was needed to reconsider the request. Why was that not done?

My doctor said she did not know where to go at this point. I asked her if the Pharmacy Benefit Company pharmacist should collaborate with the doctor on her plan, especially after so many denials..She said it does not work like that. I wondered why. Was the Pharmacy Benefit Company just to deny services, or were they in place to ensure that people (patients) were put on the most appropriate medication? It did not seem like this.  I felt we were playing a guessing game.

I decided to take action:  

So, I called the Pharmacy Benefit Management Company to find out the process and talk to someone about what was happening, as it did not make sense to me.  I wanted to speak to someone who could explain their role, the process, and what they would recommend for my doctor to prescribe to help me address my condition.

I first encountered a customer service representative from an offshore service center. I had difficulty communicating with the representative, so I asked for an American Representative. After a few minutes, I was transferred to an American Represntative. We had to review the verification process again to ensure I was a member, and then she asked how she could help me.

I explained the reason for my call. She looked into my chart and said that there was documentation in the system for one drug that was denied, but there was nothing for the other drugs my doctor had ordered. I had their names of each. She repeatedly searched and said, “I don’t see anything.” I said, “How can that be?”

I was not happy and still bewildered about how the system worked. Did the doctor’s office submit the prescription for the various drugs? Was the PBM telling me the truth? I was unsure who to believe, as I had no access to documentation and had to take people by their word.

I explained I had been working on this for weeks and was very frustrated. I asked her how she could help me with the request. She said here is what I would recommend. I will complete the prior authorization with you now, and once done, to your doctor to complete her portion. Once her portion is finished, she should return it to the pharmacy benefit company with a letter of Medical Necessity explaining why she is ordering this medication and the goals she hopes to achieve. It would be helpful for the doctor to include supporting documentation to her request. We will review it and get back to you with a decision.

I completed the prior authorization questions with the representative. They were basic demographic questions that should have been on the computer, but I went along with the process. The Supervisor said that now that we have completed this section, I will send the form to your doctor. She should complete her portion, including lining the letter of medical necessity, and send the information back to us through the system for review. Once we get it, we will review it and get back to your doctor with either approval or a talk about other recommendations to meet my needs. I thanked her and asked her to expedite the process, as we had been dealing with this for a few weeks and wanted to get started on the medication. The Supervisor told me she would mark the request as expedited.

I thanked the person for her time and help. I then called my PCP’s office, letting the doctor and her medical assistant know what had transpired and what I had done to address the issue with the PBM. I asked the medical assistant to look for an email from the PBM. As the PBM supervisor advised, I asked her to please have the doctor complete her portion of the prior authorization form and return the information with a letter of medical necessity. She told me she would do that.

A few days later, I heard from my pharmacy that the drug WAS APPROVED! 

I still don’t know where the breakdown was, but I was glad I advocated for myself. Getting involved, asking questions, following up, holding each player accountable to do their job, and following through with all parties proved the key to a successful outcome. It was time-consuming, but I made the time, which paid off.

Have you advocated for yourself when an insurance company or other entity stonewalled you? If so, please let me know how you handled the situation.