My Child Has Cancer And Now There's A Drug Shortage?!?

My Child Has Cancer And Now There's A Drug Shortage?!?

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Spinal taps, also known as lumbar punctures (LB), are never fun for childhood cancer patient or their parents. In fact, they’re actually serious business that caused Steve and me a great deal of anxiety. The whole process is very clinical and intense.

Atia had her first spinal tap when she was 18 months old. There's no sugar coating it - it was terrifying. Steve and I stood watching, wide-eyed and frozen like deer in headlights. As a form of self preservation, we quickly developed "The Routine," a series of actions perpetuated throughout the entirety of her 2+ year treatment plan (she received spinal taps every 12 weeks).

The systematic consistency of crawling onto the hospital bed with Atia, cradling her in my arms, singing "You are my sunshine" (changing the last line to "I love you more and more every day"), assuring her that she was going to be alright when she began losing control of her body as the anesthesia laced through her veins, whispering my promise not to leave her, that I'd be here when she woke up - knowing that she didn't hear a word because she was already in the depths of a medicated slumber - was strangely comforting and positively essential.

Atia depended on "The Routine," and our family entrusted "The Routine."

I became incredibly superstitious about the entire process. Everything had to play out exactly as it had the time before in order to ensure the same positive outcome. I know it sounds crazy, and that's because it was a little crazy. Over time I've learned that extreme circumstances often lead to irrational thinking. The reality is "The Routine" created for Atia’s wellbeing was just as crucial for my own stability, as it was for her and our entire family.

Once Atia was completely asleep, I slipped out from beneath her. Then, the nurses gently rolled her onto her right side, aligned her legs, pushed her knees up to her waist and her chin down to her chest, creating a perfectly rounded back.

Dr. Rubin sterilized the site and expertly prepared for the procedure. He methodically pierced her delicate skin with a long thin needle. With incredible precision the needle was inserted deeper within her spine and temporarily implanted. Upon confirmation of accurate placement, the end cap was removed, pressure was applied and spinal fluid began slowly trickling out.

A small transparent test tube collected every drop. What we wanted to see, prayed to see was clear fluid – crystal clear fluid – indicating no contamination, no evidence of disease (NED), later to be confirmed in the lab. I always held my breath until I saw the watery substance.

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Once the extraction was complete, the procedure switch gears and a preservative free chemotherapy named, methotrexate was injected into the site. Leukemia cells have been known to spread to the brain and spinal chord. One of the most effective ways to combat those rogue cells is with preservative free methotrexate (PF-MTX) injected directly into the spine targeting the nervous system.

There are two other types of methotrexate - oral and intraveneous - both containing preservatives. Intrathecal, meaning injected into the spinal canal, must be preservative free to avoid potential paralysis. PF-MTX was a staple in Atia’s cancer treatment plan, and critical to its overall success to cure her.

Recently, reports have stated that "over the past few weeks, the supply of preservative free methotrexate  reached critically low levels in the United States. This shortage may impact the care of children with acute lymphoblastic leukemia (ALL), certain lymphomas, osteosarcoma and select other childhood tumors." I read about it in this article first. As I took in each word, tears ran down my face. How could this be happening?

Methotrexate is an old drug. It’s been around for over 30 years. Ben Venue Laboratories, one of the nation’s largest suppliers of PF-MTX hasn't had problems producing it in the past, so why now? What changed? Come to find out, the profit margin on PF-MTX is minimal.

This seems to be an abominable case of money over matter. It comes down to the simple fact that in the business of making drugs, this one simply isn’t making the company enough money to produce so… production stopped. Ben Venue voluntarily stopped producing it, creating a huge discrepancy between supply and demand. And without PF-MTX children will likely die.

Children. Will. Die.

Go ahead, read that again and let it simmer. Think about your own children. What would you do?

When will medicine, research, less toxic treatments, reduced side-effects, and cures for childhood cancer become a priority? We need increased funding, we need increased awareness, we need pharmaceutical companies to do the right thing, even when it's not the most profitable thing.

With No Incentives and No Profits, it seems that some see No Reason to continue producing existing, proven drugs to help those battling childhood cancer, let alone add additional resources to discovering better, more effective drugs.

This is a crisis – a national crisis - I can't even imagine what it would have been like had we not had access to this critical part of Atia's treatment plan from 2009 to 2011.  As you read above, folks, spinal taps and receiving intrathecal methotrexate is no picnic, but not getting it is a million times worse.

Why is it that we never hear of a Viagra shortage? I’ll give you one clue… $$$

We need your help and we need it now. You can make a difference by taking action:

#1 - Contact your Members of Congress - To call your rep directly here is contact info.  Pre-written letters to Congress are available at these links from CureSearch and St. Baldricks.  Please impress upon your rep the urgency that they immediately contact the four companies manufacturing Methotrexate in the U.S. and demand that they:

  • prioritize production of the preservative-free form of the drug and
  • work with the FDA to import preservative-free Methotrexate if sources are available.

#2 - Contact the Drug Companies that manufacture Methotrexate and urge them to:

  • prioritize production of the preservative-free form of the drug and
  • work with the FDA to import preservative-free Methotrexate if sources are available.

Drug company contact information is below:

  • APP Customer Service - 888-386-1300
  • Hospira, Inc. Customer Service - 877-946-7747
  • Mylan Institutional - 888-258-4199
  • Sandoz Customer Service - 609-627-8500

Information provided by People Against Childhood Cancer

Six days ago the Children's Oncology Group posted an update stating that the crisis has yet to be fully resolved.

Please follow Atia's Project Ladybug Fund on Facebook to see how 4 year old Atia, our family and a wonderful community of supporters is helping to ease the struggles of childhood cancer by providing financial and emotional support to patients and their families in Chicago.

My Next Blog > Encore: Through Her Hair I Saw Survival

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    Let's take healthcare into our own hands and not depend on the pharmaceutical companies to make more medicines that can cause side effects. Learn more here!!

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