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Never say never

Positive Living article • Bernie Slagtman • 19 December 2004

The fusion inhibitor T-20 is presents some special challenges when travelling. Bernie Slagtman shares his tips for taking T-20 on the road.

My journey with T-20 began some four years ago. I wondered what it would do for my health, and for my travel bug — I always seem to get ‘itchy feet’ when sitting at home.

In the early days of T-20 (also known as enfuvirtide or Fuzeon), all injection supplies had to be stored between 2 and 8 degrees, making travelling quite a challenge. I had to install solar panels on my motor home and special refrigeration to overcome these challenges.

Life has now become a lot easier, however there is still some planning and special consideration required.

When I go out just for the evening, I try to plan for timing, privacy issues, hygiene, and supplies including sharps disposal. I use a cool bag if preparing an injection in advance. However, as frothing of the injection can easily occur, I have generally found mixing on location an easier way to go. A supply of paper towelling is easy to carry and provides for a clean working area. If I use public facilities, then I seek out a handicap toilet or baby change room for hygiene and privacy reasons. I always take an extra supply just in case something goes wrong such as a needle falling on the ground or a faulty syringe.

I enjoy escaping the winter and travelling within Australia. Some of the things that I have to prepare for include adequate lighting (a challenge when camping), security and storage of syringes when in shared accommodation, stability of the vehicle for injecting (trains, caravans and boats tend to lurch around), and refrigeration in the warmer climates. I always use a cool bag when carrying T-20 in my car as the sun soon warms up the inside beyond the acceptable temperature range. I also plan where I can pick up extra supplies — this medicine is not always readily available at short notice. I usually can dispose of my sharps at hospitals or council health departments.

Last year, I managed a great three-month trip to Europe, carrying all my supplies with me. There were some challenges, but with careful planning these can be minimised or overcome. I made sure that I always arrived at the airport early and carrying a letter from my doctor, previously forwarded to the airline, covering all my medical supplies including syringes as well as a request for additional on-board and check-in luggage.

I made sure my doctor’s letter didn’t disclose my HIV status, and referred to my treatments by their scientific names, so as to avoid any possible discrimination. Where possible, I repacked my supplies more efficiently retaining the original packaging. I also planned for unexpected delays en route, or damaged or lost luggage: as a minimum, I took adequate supplies on board to cover the estimated replacement period. As well as this, I carried all my difficult to replace and temperature controlled medications with me — temperatures within the cargo hold may not be suitable for some medications.

The on-board crew were genuinely helpful in finding discreet places for me to inject. At airports, I found there were always empty departure gates where I could find some privacy. I had to provide for my own sharps disposal. I found that pre planning for time zone differences was important. My clinicalPertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science. nurse provided some reassuring back up assistance.

Some T-20 users do not declare that they are carrying syringes and associated medications when travelling. This is a personal choice, however the regulations clearly state that they must be declared. I would suggest that such a decision be influenced by where you are travelling and that country’s likely attitude towards this type of infringement. On recent air travel within Australia, I have carried my doctor’s letter with me and decided not to declare unless asked. On all but one occasion, there was no detection of syringes.

T-20 is a complex drug to manage and travelling with it presents some major challenges, but always remember, never say it can’t be done. If you’d like further information on travelling with T-20, your doctor or clinical nurse can provide it, or you can e-mail me.

Traveller’s Tips

Prepare in advance and remain calm at all times. Things to consider include:

  • Scheduling of injection time, location
  • Adequate supplies
  • Privacy
  • Hygiene
  • Temperature control in car and tropics
  • Doctor’s certificate and letter
  • Carry supplies on board aircraft
  • Airline/security disclosure
  • Sharps disposal
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From Positive Living

This article was first published in the December 2004 issue of Positive Living — more than nine years ago.

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