At the outset- I need to write a disclaimer- I know the healthcare system better than most. I’ve been working in one fashion or another in healthcare policy for more than a decade. So- I assume that I am pretty savvy about the system and how it works but recently I have been challenged by the system in regards to my own healthcare. My question: What do average people do?
Let me tell you a personal story. I have had disabling HIV (an AIDS diagnosis) for nearly 8 years and I am being treated for HIV and Hepatitis C- and I am on Medicare. I am fortunate- from all accounts I have one of the most decent Medicare Advantage Programs in the country- and I know I cost them a fortune. I have basically plodded along as usual- with no complication other than my usual AIDS ups and downs -but pretty seemless insurance coverage- until I began my treatment for Hep C. The treatment regimen I am on for Hepatitis C is Ribavirin and Interferon. One of the HIV drugs that I have been taking- Combivir is contraindicated concomitant with Interferon.
So part one- we needed to do a resistance test for another drug- Abacavir since it would work with the interferon, but by itself can cause a hypersensitivity reaction that can be fatal. It took 3 tries before the lab got the tests right- and I found out that I could indeed take the Abacavir just days before I was to begin the interferon therapy.
Part two- I have secondary insurance that wraps around my Medicare D program which is quite wonderful and should result in $0.00 co-pay by me. My current drugs run over $6,000.00 a month so good coverage is essential and I know that I am phenomenally lucky. But getting these two insurances to work together has been a nightmare.
My primary insurance would only cover the interferon from one particular mail order pharmacy and while my secondary insurance was accepted by this pharmacy- they seemed unfamiliar with how to handle the second insurance billing and I had to walk them through it- step by step.
Then there was the Ribavirin. One insurance covered 600 mg tablets called Ribapak and the secondary insurance would only cover 200 mg capsules. I essentially needed to arrange a conference call between my doctor, the two insurance companies and the pharmacy to get them to agree to a formulation of the drug that was acceptable to everyone. Mind you- the drug is the same- the form (capsule or tablet), the dosage (1 pill or 3 at a time) and the packaging are the only differences between the various formulations. Now isn’t that ridiculous?
So- I got through it- and, as far as I know, it has all worked out for me. But it made me think what people go through who are less savvy than I? What do people who are trying to navigate this system without my proferssional expereience get through it? Add to this labyrinth the fact that most people who need to navigate it are among the sickest and most vulnerable. What do these people do?
I asked my primary care physician- who is one of those doctors who has integrity and believes everyone has a right to healthcare- how the average person deals with this. As I suspected- she said that many times people just give up. It’s too hard and they don’t have enough energy.
This is appalling. It is immoral that 45 million people go uninsured and tens of millions more are underinsured. But even when people have “adequate health coverage”- it is still difficult – and people fall through the cracks and give up on the treatments that can either save their lives or make them better unless they are tenacious advocates or have someone who is willing to take on that role.
Think about the elderly and the disabled who rely on Medicare. The maze of Medicare is daunting. Understanding the coverage, the donut hole, traditional fee for service versus Medicare Advantage, Low Income Subsidy requirements, drug formularies, and the more nuanced issues such as I faced. People give up. Why has this become so incredibly complex? Accessing medical care for the most vulnerable should not require a Masters in Public Health. But- unfortunately due to the influence of the pharmaceutical industry, the insurance companies and the for-profit healthcare industry- our system is broken – even for those that have adequate coverage. The system – when it exists at all- is unnavicable and is not consumer friendly in the least. If I were a conspiracy theorist it would be easy to believe that the system is set up for the corporations and not for the patient. Actually- I am not a conspiracy theorist, this experience causes me to believe that the patient seems to be the afterthought in American healthcare.
This country’s healthcare is broken at all levels- the uninsured, the underinsured and the insured are all negatively impacted by corporate profits at the expense of universal, streamlined healthcare.
It’s no surprise that I am an advocate for single payer universal healthcare. While some of the Democrats have proposals that are better than nothing- none of them is truly adequate. The Democrats are terrified to standing up to the absurd claims from the Republican camp- that universal healthcare would result in a chorus of “The Internationale”.
Until the people of this country get out from under the fear of “Socialized Medicine” and the misguided fear that Josef Stalin is about to come into their homes and make medical decisions, the better we will be. Even the upper middle class that are insured- like me- are victims of our broken healthcare system. If people would wake up and stop holding on to a fallacy that we have the most enviable healthcare system in the world- we might be able to have true health care reform.