Facing the System Head-On

A Broken Drug Industry

I’ve spoken many times about my children’s genetic condition known as Cystinosis. Having children with an illness is stressful enough, but it is made more stressful by the cost of the medication needed to treat their illness. A few years ago, the manufacturer of their medication was acquired by the company Horizon Therapeutics. Learning more about Horizon’s rise within the pharmaceutical industry was enough to make me sick!

Horizon got their start in 2015 and in a relatively short period of time has racked up a collection of crucial drugs worth billions of dollars without ever licensing a product it invented. How they did it serves as a great example of the brokenness of the drug industry. Click here to read more about the rise of a company worth billions that never made a single product.

On the Market

When Horizon acquired the manufacturer of my children’s medication, the price of the drug increased by 50% in a short amount of time – from $50,000 to $75,000 a month per child. They are able to charge these ridiculous prices because the reality is that people with Cystinosis must take the drugs needed to treat it or they likely will not live past the age of 10.

I am disgusted that this company and its leadership has made so much money on the backs of people like my family. However, I am actually glad they were acquired because things can only get better from how it works currently.

My Own Experience

In addition to the exorbitant costs, to make matters more difficult, the drugs that my children take are limited distribution. This means only one pharmacy in the entire country can fill their prescriptions and, in my case, it is a big 3 PBM owned specialty pharmacy. As a parent, I do not have a choice as to which pharmacy I can go to, and I can tell you from experience that service is not important to the pharmacy I am forced to use. I am not picking on this particular pharmacy as I have used 3 of the 4 largest specialty pharmacies in the country and the experience was just as awful each time.

In some cases, I get placed into what is called a bridge with my manufacturer and they use a special pharmacy (the same pharmacy that would be used if I were eligible for PAP) to send me my children’s medications.  This normally happens when the pharmacy screws up so bad, my children will run out of medication without intervention.

When using this special pharmacy, I have delightful experiences and am envious of those who get to use them on a regular basis.

The Rise of SHARx

Companies similar to Horizon were my motivation behind why I began SHARx.

Drug companies and manufacturers make millions and billions of dollars by jacking up the prices of their medications. Most people attempt to pay for their medications until they can no longer afford to. Many employers are faced with this same dilemma. With insurance, employers are forced to find ways to pay for that one person that costs more than everyone else combined. At SHARx, we recognize that you cannot “insurance your way” out of this problem. It is not working for employees or employers.

Addressing the Now with the SHARx Solution

SHARx’s mantra is to solve the problem now before you face it head on. We live in a very broken system, and it is only a matter of time before an employer is faced with making those tough decisions. Even if an employer is not currently dealing with these issues, it is likely what the future holds. The average price of a new medication is rising dramatically. Employers must be prepared for when they eventually feel the sting of high drug costs.

People make the best decisions with the information that they have been given. Unfortunately, many people using the broken insurance system have not been given the information needed to make sound decisions. That is where SHARx steps in to let people know that it does not have to be this way. For me, I once was the broker. I was coming from the top down, but becoming well-versed in the industry has made me realize the importance of coming from the patient up. After all, that is where the process starts and ends.

Applying Business to Medicine

I have half a million reasons that illustrate how pharmaceutical giants do not really care about the people using their products. It is frustrating to see how companies like Horizon exploit people like my children for financial gain, yet they use their faces in their advertising. These are young children who suffer every day from a disease they did not ask for and are being used as marketing subjects. They want people to believe that as a company they care about the people taking their medications and desire for them to get better. However, they really want people to take their drug as much as possible for as long as possible. 

If you ever ask big pharma why they charge so much, their answer is always about their research and development. Though, when you poke holes in that facility of an excuse, the answer becomes ‘because we can’. They exponentially recoup their investment. It is really about ROI, not R&D. Essentially, they applied business to medicine. 

Stop Playing the Game

SHARx wants to help people who do not have a seat at the table with the drug companies and insurance giants. Too many people are being forced to play games, by companies like Horizon, that they cannot win because they are in the system that beats them down and wears them out. They are tired and not speaking up has become the norm. We want to change this narrative and disrupt the corrupt system. Our goal is to stop the game and liberate the member from the system that was never built for them.