Drug Shortages Impact Sick Babies

Way back in January a nurse-friend of mine posted on Facebook that there was a national drug shortage on pediatric cancer drugs. I was shocked. Many discussions took place amongst my family and friends about just how appalling this was. While we were in the NICU we heard about these drug shortages (we had to have a test delayed a day for Sweet Pea because our docs couldn't get the meds they needed) but did not know the full extent of the problem.

DDAVP vial and ampule with filter needle

Fast forward a month and it was now time for us to refill Sweet Pea's DDAVP - which we need in a reusable 10mL vial for nightly injections. We went to the pharmacy and were told that they only had 1mL glass ampules and that they would not be able to get our regular drug because it was no longer being made. WHAT!?! Of course, I freaked. More than freaked, actually. I panicked. Sweet Pea needs this drug in order to stay out of the hospital. She has something called diabetes insipidus which requires her to drink a tremendous amount of fluid each day. Because she is so tiny, she cannot physically drink the amount required for her to stay healthy.  The DDAVP gives her about a 12-hour "break" from drinking; this keeps her sodium in check and allows her to sleep through the night.

As soon as I heard the news I emailed Sweet Pea's pediatric endocrinologist and called her pediatrician to see what they knew about this. To my surprise they knew nothing. (To be fair this is a very rare condition so they can't possibly keep up with everything there is to know.) I then got online and posted in the Got DI? group on Facebook to see if this was something that was impacting other people as well or if it was just in our area. I quickly learned that this has been a problem off and on since 1998. Again, I panicked.

It took two months in the NICU to figure out the correct method and dosing of DDAVP to get my daughter home. Now I was imagining life without this medication and it was frightening - we did not want to end up back in the hospital. Although DDAVP comes in other forms, a pill and a nose spray, these won't work for us because there is just too much medicine in the product. This is why these injectable products are so important to babies - they are all just too small to take other forms of the drugs that they need.

After a three-state search (with no results - every hospital had ampules, but not vials of the med) I finally located a stash of DDAVP through our prescription mail-order company. It's a seldom requested drug so they have a small stockpile. Our problem is solved for the next three months, but then what?

I've been researching injectable drug shortages for the last month or so and have learned that there are several reasons why the shortages are happening:

• some drugs were found to be contaminated with foreign particles
• some raw materials required for certain drugs are unavailable
• production of more popular, and more profitable, drugs ties up the manufacturers

That last one really breaks me heart.

Experts are saying that this problem will get worse before it gets better. In October of 2011, President Obama signed an executive order asking drug companies to alert the FDA when they know there will be a shortage and to encourage the FDA to support companies who want to make a drug that is in short supply. In reality, this order does nothing. You can't force manufacturers produce an unprofitable medication.

So what can be done about this problem? First, you can keep yourself informed on the topic; education leads to positive change. I've started posting links to important drug shortage information on this blog. Bookmark it and come back often. Second, you can tell everyone you know about the crisis. I don't think most Americans are fully aware of the problem. Finally, you can write letters to your legislators (Representatives and Senators) and to the FDA (druginfo@fda.hhs.gov) encouraging them to find a solution.

We hope to go to Washington in July with Sweet Pea to speak directly to our legislators about this problem as part of Family Advocacy Day sponsored by all the children's hospitals across America (in our case Boston Children's). We'll know in a couple weeks if we were selected. Keep your fingers crossed for us!

***UPDATE: There is also a petition on Change.org re: permanently eliminating the shortage of generic drugs. It's written about methotrexate, a drug used to treat a certain form of leukemia, but could be applied to all generic drugs. Please sign it!***