When Your Disease is Rare, but Not Expensive

This month is Adrenal Insufficiency Awareness month. I have explained already the science behind adrenal insufficiency on a very basic level, especially primary adrenal insufficiency also known as Addison's Disease which is what our son has. Addison's Disease is a rare disease. Addison's Disease is an invisible disease. Addison's is a disease with a treatment, but no cure. This treatment is fairly inexpensive, which is good because the medications are necessary to keep someone with the illness alive. But there are actually issues with having an illness that does not cost much to treat - because we all know that a lot in the world comes down to money.

Just recently I told you about our conference that was help in Portland, OR. The pharmaceutical company that is largely responsible for the medications taken on a daily basis and the emergency injection was of little support in this endeavor. Typically when an illness organization is putting together a conference they reach out to companies that produce the medications, devices and supplies as sponsors and possible vendors for the event. We did all of that. This company had typically been consistent in their support, but now had no support to give. Of course, at the same time we hear of this company putting millions into treatments and cures of other illnesses. But there was none for us. What is the difference? Those other illnesses bring in a lot of money for a pharmaceutical company, whereas ours does not. Does that mean that our people need less support? No. Does that mean that we need to get together with each other and professionals who know our illness less? No. It means we have to work that much harder to have a simple conference in a hotel, not a fancy theme park conference with all the bells and whistles.

I am not saying that I want our medication to cost more. I am saying that even though Adrenal Insufficiency is not an illness that is going to make any company a lot of money, it is an illness that has a strong community of people who care to make it work .

When we are talking about an illness that is invisible and does not have a lot of money involved, those in the rare disease community may see it as not important to research and invest their time and money on. Yes, I am thrilled that we have the medications we have, but there is so much more that we need and because the money brought it brings in is not enough there is not as much research as some other illnesses. We should not still have the same treatments today as JFK did in the 1960s. We need emergency injections that are easier to administer so that no one is in a situation where someone is afraid to give it to someone or unable to give to themselves. We should have time release medications that make the amount of medication released into the body more like that of a person with functioning adrenal glands. Pumps to administer our medication should be more accessible for those who cannot tolerate or metabolize oral medications.

But none of these things will make a big bottom line for anyone, therefore our community is stuck where it was 60 years ago. We live in the country with the most money, the most technological advances and some of the most brilliant minds and yet greed is what prevents people with this illness from accessing some medical advances that i have heard talked about being on the horizon for the last eight years. How long will we wait?