I was listening through a funk mix the other day, and this gem came on, courtesy of The O’Jays. Written by the songwriting pair Gamble and Huff who was largely credited with creating the Philadelphia sound of the 60s and 70s, it is a song that anyone can enjoy. Whether you’re a funkateer or not, or are part of different generations (millennials, Gen Xers, baby boomers, etc.), anybody listening to this song starts bobbing their collective heads to the rhythm. Starting with a hi-hat and funky guitar, then slowly added with a great baseline, and the melodic voices of the O’Jays that was very reminiscent of the Temptations. Everyone knows the words to this timeless classic; they hold true as much today as they did in 1973.
For the love of money
People will steal from their mother
For the love of money
People will rob their own brother
For a small piece of paper it carries a lot of weight
Call it lean, mean, mean green
While I was listening, I related this to a current and very important matter: drug prices. This is an issue that affects not only the CF community, but American society in general. Anyone with Diabetes who may need insulin, to someone with and auto-immune disease such as Rheumatoid Arthritis or Crohn’s disease, to a person with cancer. These people are clinging to hopes of any new medications that may be available, that in turn may increase not only their life expectancy but also quality of life. Mari and I were watching Hasan Minhaj’s new show on Netflix, Patriot Act, while he was discussing this very topic. America has the highest drug prices of any developed country, causing certain people to prioritize whether or not they can get their needed medication due to overwhelming increase in costs. People are traveling to other countries and smuggling back their meds, or spacing out their required daily medications and not taking them as prescribed because they cannot afford the refills. That is an incredulous statement for the richest country in the world, don’t you think?
For me, a person who with CF, I can relate to these struggles. While we were not poor growing up, I can only imagine the sacrifices my parents made in order for me to receive the proper care and all the newest treatments available. I know I probably didn’t appreciate it at the time, but I sure do now as an adult. There have been more than a couple times that I have not been able to afford my medications, due to a variety of reasons. Whether it was a poor insurance policy that only covered a minor percentage of my medications (most CF meds are top tier without any generic substitute), or not being able to shell out the hundreds of dollars for nutritional supplements or vitamins/minerals that are not covered on any insurance, or going to collections for the rising number of monthly payments to hospitals and clinics, the list goes on. All the while, I make a good living….this fact makes it more difficult to swallow. How can people with chronic illness afford be expected to succeed in this system when they can’t even afford what they need to survive?
This discussion becomes even more relevant to the CF community in the age of CFTR modulators. It’s a new class of drug that has been undergoing trials over the past several years. In short, it helps regulate the sodium chloride pump and prevents the buildup of sticky mucus congregating in the lungs. It’s important to point out that these drugs are not cures, but can significantly impact lives of those with CF. There are different classes of modulators, dependent on the specific genetic mutation of the person with CF.
Orkambi is one such drug, one that targets those with CF who have 2 forms of the most common genetic mutation (F508Delta). It is now on the market, at the low, low cost of approximately $100,000 per year!! Sounds like a bargain, right?! Not so much say the insurance companies. Certain companies, both private or state/federally regulated, have determined that the cost does not justify the possible benefit of this medication. In turn they are denying coverage for these meds. Imagine this……..someone who has lived their whole life just getting by until a possible life-altering medication comes by, and when it finally does it isn’t covered. What would you do? Most people, myself included, could not even fathom shelling out many thousands of dollars per month in order to afford the drug. This is another example of CF literally beating the life out of you…….even when there is hope it comes with heavy strings. Are you supposed to go into bankruptcy just to live? What kind of life is that? How is the government going to help these people?? Oh yeah……..they’re not! They are just going to try to reduce people’s access to the medical care and aide they need by reducing the qualifications for open market insurance and Medicaid expansion. It’s exhausting and infuriating!!
It all comes down to money: how much the drug companies can make, and how many politicians they can have in their pocket to influence their profit margins. Like the song says, “For a small piece of paper, it carries a lot of weight.” Truth!