When The Cost Of Help Skyrockets

Jan 25, 2019 | Patient Blog

I was standing in line at the grocery store when it first hit me. The pain was unimaginable. And it just kept coming in waves. I remember standing there and praying the checker would fast-track my groceries. Fortunately for me, I was in the express line.

Between the sharp pain and immediate fear of what was happening to me, it didn’t take long after arriving back home that I asked my wife to drive me to the emergency room. The 15 minute ride felt like an eternity. Once I arrived at the ER, I was fortunate that there was hardly anyone else there that night. Because of this, and after describing my symptoms, they were able to fairly quickly get me on an IV to manage the pain as well run a CT scan to find out what was happening.

It would be shortly after that I would first learn that I had a kidney stone. I would later also learn that I was not alone. According to the National Kidney Foundation, over a half a million people go to the emergency room for kidney stone problems every year.

For me, mine was the most common form in that it was a calcium stone. The NKF states that a calcium stone is created when calcium combines with oxalate in the urine. The foundation goes on to say that inadequate calcium and fluid intake, as well other conditions, may contribute to their formation.

After this experience, I am one of the lucky ones in that I have only experienced these type of kidney stones two other times in my life. For me, I wouldn’t wish them on my worst enemy. Let’s be real, that pain was awful.

But, there are other types of kidney stones, too. And for PSI patient Christine and the one in every 7,000 people who suffer from cystinuria, which is a form of kidney stones called a cystine stone, it’s a lifetime of pain I cannot even imagine.

Cystine stones most often are recurring and are typically larger than other kidney stones. This type of stone is a rare disorder called cystinuria. It is an inherited disorder.

The National Kidney Foundation states that Cystinuria only causes symptoms if you have a stone and that kidney stones can be as small as a grain of sand. Others can become as large as a pebble or even a golf ball.

Forty-Four Years Of Kidney Stones

“Forty-four years ago I was diagnosed with hereditary cystine kidney stones. My body chemistry forms them all the time and the goal is to prevent them from becoming too large to pass, requiring basket retrieval or dissection of the kidney. After various medications and episodes over a fifteen year span, a nephrologist finally was able to prescribe the one medication, which had turned out, to successfully keep my stones in check,” Christine tells us in an email she recently sent us.

Can you imagine the relief Christine felt when she finally was prescribed something that helped restore a bit of normalcy to her life? Finally, there was a medication that would sustainably keep her stones in check, along with the countless others, who too, suffered from cystinuria.

But that would not be the last battle fought and won for Christine in her lifelong battle with the rare disorder.

When The Cost Of Help Skyrockets

“As I understand it, there is only one manufacturer of this medication. When that company was bought out a few years ago the price skyrocketed from $500 a month to over $13,000.00 a month, cost-prohibitive to 60+ year-olds approaching retirement,” describes Christine.

In a panic, Christine then reached out to the company and they guided her to seek grants from non-profit organizations for financial aid, which led her to Patient Services, Inc. In this, the support was able to help prevent hospital stays, procedures, pain and medical expense.

If it weren’t for this much needed aid, Christine was faced with either stopping the medication altogether and taking the risk of further medical complications or selling all that she had worked for to afford it.

DYK That Health Care Charities (Like PSI) Are Under Threat?

Recently, a federal policy was issued by the Centers for Medicare & Medicaid Services (CMS) is prohibiting charities from helping Americans pay their health insurance costs, keeping essential treatments and services out of reach for many of those most in-need.

You can learn more about it as well as what you can do by visiting our #LetCharitiesBeCharitable action page on our website here.

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