The decision to put your baby on ACTH is not an easy one. Far from being the perfect treatment, it is one of the more effective ones but can also carry many significant side effects, some of which may be fatal. There are other medications but the decision is ultimately yours. Personally, we had decided to go with ACTH as our first line of treatment, and thus, documented tips to help others who may have also chosen to do the same.
Aside from the daily IM injection that you have to administer, there are other things that you’ll need to monitor daily. Here is a guide and links to some resources and where to obtain supplies. We bought everything via Amazon since we have free 2-day Prime shipping with Amazon Mom and there was not much time from diagnosis to early treatment.
Questcor(R) is the only manufacturer of ACTH. It’s branded as H.P.Acthar(R) Gel. You can find more about it directly from their website.
We have private insurance (aka health insurance with a medical insurance company through work), so here are tips from our experience. Getting a rare, $30,000 drug for the first time is not easy. The pharmacy (not any local pharmacy, must be specialized, although I *heard* Walgreens *might* be able to special order it) can overnight the medication to you but the paperwork takes at least a full day to process, so be prepared. You can’t just fax in a prescription to the pharmacy at 4pm and expect it to be overnighted to your doorstep by the next day. Instead, here are the steps to take:
- Call your insurance company. Find out if your benefits helps pay for part of it. Ask for contact info of their contracted specialized pharmacies that may carry H.P.Acthar Gel.
- Call specialized pharmacy. Ask if they have it on hand and available and can be shipped/delivered within an acceptable time frame for you.
- Call ASAP (Acthar Support & Access Program) at 1-888-435-2284. Ask them to fax the Acthar Referral/Prescription Form to your doctor. You can also download it here.
- Have your doctor fill it out and fax it back to ASAP with your ACTH prescription. Note: Some pharmacies can be picky about your doctor specifying the exact dosage and # of days it should be used for, even though being on ACTH often means different dosages from day to day while your doctor is titrating it specifically to your child’s needs.
- ASAP will review, process, check with your insurance, and notify your specialized pharmacy.
- The specialized pharmacy will review, process, check with your insurance (again), then call you for your mailing address and most importantly, your payment or copay.
- Pharmacy sends out the drug in a cooler, you get it and refrigerate it upon delivery.
Due to ACTH’s side effects, your doctor will probably prescribe a month-long prescription for Zantac (acid reflux) and an oral antibiotics to fight off everyday, otherwise harmless bacteria.
Monitoring Blood Pressure
High BP is a side effect of ACTH. Unless you’re a nurse/medical assistant or have previous training, you may not know how to accurately measure BP manually. Even then, infant cuffs are difficult to find. And blood pressure needs to be checked daily. That’s where a digital wrist blood pressure monitor (small enough for a baby’s calf) comes in handy.
Checking Urine Glucose Levels
There should normally be no sugar in your baby’s urine. But ACTH could potentially change all that, so it’s important to monitor your child’s urine glucose levels daily. To do this at home, an absorbent sterile gauze pad and some urinalysis strips is all you need. Place a gauze pad in the diaper and press it against the urinalysis strip after your baby urinates. I personally opted for the sterile gauze pad because with the compromised immune system from being on ACTH, I want to minimize my baby’s exposure to germs and bacteria.
Checking for Bloody Stools
Home kits are less readily available for this one unfortunately. The few I found were $10 per test, which means everyday for a month is $300. A bit hefty. So instead, every time Kaleb has a poopy diaper. I bag it in a Ziploc and take it down to our pediatrician’s office or affiliated lab (if they’re closed).
Drug stores sell syringes for $2+ each and they’re 10 mL ones that don’t offer the accuracy that we need. So instead I found these sterile 1mL syringes (for ACTH injections and Zantac) and 3ml syringes (for oral antibiotics) from Amazon for $0.15-$0.16 a pop in a pack of 100. You can get a prescription for 25g needles from your doctor, or in our case, we got enough for a month complimentary. You’ll also need the small round band-aids after each shot, as well as alcohol swabs for wiping the ACTH top as well as your child’s thigh prior to injection. We also got nitrile examination gloves for application of topical antibiotics when our son needed it, but some may want to use it during injections as well.
You will also need a sharps container for disposing used needles/syringes. Instead of purchasing one, some states will allow an old laundry detergent bottle with a screw-on lid and seal it before disposal (NOT in garbage or recycling, but look up your local sharps disposal site). But laws concerning this will vary per state, so find out what your local state laws are concerning the disposal of sharps before doing so. You can also purchase a sharps container but you still have to dispose of it accordingly.