Here are the results of my research so far into traveling with Cinryze, as previously promised:
First, my specialty pharmacy (CareMark) case manager confessed they are unable to provide a “travel kit” because they are waiting for it to be provided by “the manufacturer.” Foolishly, I assumed the manufacturer to be ViroPharma and only realized later that she could have meant a manufacturer of travel kits, so I will have to get that point clarified next week. In the meantime, I contacted my case manager at Cinryze Solutions to see if a travel kit was in the pipeline and there wasn’t any information forthcoming from that vector.
My CareMark case manager was able to provide the following advice/service:
1. Your specialty pharmacy will provide you with a letter, on their letterhead, documenting your condition and that you are legitimately carrying Cinryze to treat your condition. It is recommended that you have your physician counter-sign this letter and keep it with you when going through security checkpoints.
2. Keep your insurance information with you when going through security checkpoints.
3. Place your Cinryze and supplies in a hard-sided container.***
Here is what the Transportation Security Administration has to say on the matter:
“Our current policies and procedures focus on ensuring that all passengers, regardless of their personal situations and needs, are treated equally and with the dignity, respect, and courtesy they deserve. […] In order to achieve that goal, TSA has established a program for screening of persons with disabilities and their associated equipment, mobility aids, and devices. Our program covers all categories of disabilities (mobility, hearing, visual, and hidden).”
Our condition, just like diabetes, falls under the category of “hidden.”
Under “Disability-related items permitted through the security checkpoint,” Cinryze and its related supplies technically falls under the category “Medications and associated supplies,” but would be treated the same as the category “All diabetes related medication, equipment, and supplies” because of two similarities: Needles and liquids*.
Here are the guidelines for traveling with diabetes, modified to fit Cinryze:
NOTIFY the Security Officer that you have Hereditary Angio Edema and are carrying your Cinryze and medical supplies with you. The following supplies and equipment are allowed through the checkpoint ONCE THEY HAVE BEEN SCREENED:
A. Cinryze (vials or box of individual vials) and Cinryze dispensing products (i.e., sterile water, saline, heparin, needles, cleaning agents, numbing agents);
B. Unlimited number of unused syringes when accompanied by Cinryze or other injectable medication;
C. Portacath supplies (cleaning agents, infusion kit, Huber needle); portacath supplies must be accompanied by Cinryze;
D. Unlimited number of used syringes when transported in Sharps disposal container or other similar hard-surface container;
E. Sharps disposal containers** or similar hard-surface disposal container for storing used syringes.
Cinryze must be clearly identified.
You have the option of requesting a visual inspection of your Cinryze and associated supplies. See the Medication section below for details.
Here are the guidelines for traveling with medication as they pertain to Cinryze:
All medications in any form or type (for instance, pills, injectables, or homeopathic) and associated supplies (syringes, Sharps disposal container, pre-loaded syringes, jet injectors, pens, infusers, etc.) are allowed through the security checkpoint ONCE THEY HAVE BEEN SCREENED.
1. We recommend, but do not require, that your medications be labeled to assist with the screening process.
2. Medication and related supplies are normally X-rayed. However, as a customer service, TSA now allows you the option of requesting a visual inspection of your medication and associated supplies.
3. You must request a visual inspection BEFORE the screening process begins; otherwise you medications and supplies will undergo X-ray inspection.
4. If you would like to take advantage of this option, please have your medication and associated supplies separated from your other property in a separate pouch/bag when you approach the Security Officer at the walk-through metal detector.
Request the visual inspection and hand your medication pouch/bag to the Security Officer.
5. In order to prevent contamination or damage to medication and associated supplies and/or fragile medical materials, you will be asked at the security checkpoint to display, handle, and repack your own medication and associated supplies during the visual inspection process.
6. Any medication and/or associated supplies that cannot be cleared visually must be submitted for X-ray screening. If you refuse, you will not be permitted to carry your medications and related supplies into the sterile area.
Here are some other items of interest:
The limit of one carry-on and one personal item (purse briefcase or computer case) does not apply to medical supplies, equipment, mobility aids, and/or assistive devices carried by and/or used by a person with a disability, so you can pack and carry-on your Cinryze supplies on a separate bag/carry case. In fact, it is recommended, as indicated in the next “tip.”
Pack your medications in a separate pouch/bag to facilitate the inspection process. Ensure that containers holding medications are not too densely filled, and that all medication is clearly identified. It is recommended that passengers refrain from packing any medications in their checked baggage that they do not want exposed to X-rays. Instead, send larger quantities of medications to your destination by mail or any other way preferred.
If you have medical documentation regarding your medical condition or disability, you can present this information to the Security Officer to help inform him of your situation. This documentation is not required, but neither will it exempt you from the security screening process.
*”If liquid medications [i.e., sterile water, saline, heparin] are in volumes larger than 3 ounces each, they may not be placed in the quart-size bag [with all of your other small, travel size carry-on liquids] and MUST BE DECLARED to the Transportation Security Officer. A declaration can be made verbally, in writing, or by a person’s companion, caregiver, interpreter, or family member. Declared liquid medications and other liquids for disabilities and medical conditions must be kept separate from all other property submitted for x-ray screening.” Because I know that not everyone has pre-filled and pre-measured supplies of these liquids.
**I found the perfect travel sized sharps containers on Amazon; they are called Medport Sharps on the Go. A reviewer noted:
“There are 12 sharps containers in a retail package. There are 2 of these packages for a total of 24 sharps containers. Each container is about 6″ long, 1-1/4″ x 1/2″ wide. The lid is double sided. One side slides on, the other permanently locks the container. The instructions say one sharps per container. You could VERY easily put [in] multiple…if you are only putting in the IV Catheter, and it would hold 2 or possibly 3 of an average sized needle w/syringe.” Cost is $15.98; I didn’t pay shipping because I belong to Amazon’s Prime program, so you need to consider that when determining your total cost.
***Here is what I did not find on the TSA website: There was nothing requiring your medication to be in a “hard-sided container,” although it would be wise (IMO) to pack your glass items in a manner that will prevent breakage. The only thing required to have a hard surface is the sharps container.
Happy travels to all.
The reality is that no one at security gave a shit, but I’d still follow all the rules because the first time you don’t, you’re going to run into the hard case that actually knows the laws and does the job right, and you are going to be in a world of hurt. Oh, and travel kits are now available.