Within the aHUS Patients’ Research Agenda is a topic about how aHUS affects work and school. A big question with so many facets. Among them would be about how it affects travelling away for work and also holidays from work.
There is little in the public domain which gives any answers to this matter but it is something which matters to those who are being routinely treated with eculizumab, and even those who are in the process of withdrawal from eculizumab and in remission.
The first two basic facts about aHUS travelling are:
– Eculizumab is not available everywhere in the world. aHUS patients needing eculizumab should only travel to countries in which Alexion has a marketing presence.
– If those on routine eculizumab infusion intervals can plan their journey in between infusions ( with up to 2 days leeway, no infusion away from home is needed. Those on approved infusion intervals of up to 28 days have more flexibility.
If however the journey including flights etc is going to be for more than 17 days or a routine infusion falls within the journey period , away from home infusion is a possible option.
Arranging one ( or more) infusion away from home ( or home hospital) is not straightforward.
Those aHUS patients who experience end stage Renal failure needing dialysis when they traveled may have found that there was a considerable global network of dialysis centres and that their healthcare providers often had funds to pay other dialysis units to provide a temporary service. They also had a considerable wealth of knowledge and established processes and resources to facilitate it on a patient’s behalf.
All in all it was a straightforward and an assuring facility for those on chronic dialysis to safely travel , work and relax away from home.
Whilst it is feasible to do so , it is not that straight forward for away from home infusions to be arranged whether it is within your own country , continent or another.
There is no “global directory” of places where an infusion can be given. The patient therefore either has to search the internet or rely on the accrued knowledge of their healthcare providers to find a centre through their clinical network or past patient experience. Even then there may be no knowledge of an acceptable facility in a location that no one has been to.
In the USA there are privately run “infusion centres” specialising in providing routine patient drug infusion services , including in many cases eculizumab, with branches across several states. Although intended for local patients, the travelling patient can access these services.
That said patient search is difficult because they may not know what they are looking for, nor how to get an idea how much it will cost them, as away from home infusions must be paid for personally out of pocket although the eculizumab will be covered by their insurer or home country health service.
Another source of potential infusion sites information is Alexion whose teams in different countries might be aware of places they have delivered to for away from home patients.
Through these uncertain routes an affordable centre may be found eventually.
Ideally these arrangements should be all in place before the journey flights etc are booked but it could take weeks or months to arrange. Some health care providers estimate it can take at least two months for this to be completed. Meanwhile nothing can be done about booking employment travel or holidays. Maybe costing the patient more as potential journey costs rise.
Once found an order can only be made by the patient’s own doctor using, usually, an online process set out by the infusion centre. The centre, although contactable by the patient , is not able to give answers about availability or times and even how much the infusion is likely to cost( excluding the cost of the drug). This cost can differ between centres with a range of $150 to $500 per infusion . In some centres there may be a requirement for a consultation by doctor meaning a further $500 to pay. Such consultations may only be cursory, maybe taking no more than 5 minutes, but needed to formalise the prescription of the drug to permit infusion to take place.
All of which has to be separately paid for by the patient, unless the patient is covered by health insurance (but not travel insurance).
If there is availability at the away from home Centre and the patient’s health care provider can place an order and sort out the delivery logistics with Alexion , the patient can finally be told appointment times and charges.
All that remains is for the patient to turn up at right location at the right time , pay any out of pocket fees and receive the infusion safely.
It can be worrying time once the patients leaves their home country. Contact details are important both with the infusion centre and home healthcare providers should anything go wrong. In its research the alliance has found that foreign aHUS patients visiting Australia are given a contact person by Alexion which offers even more reassurance. It is not clear whether Alexion would do this everywhere, not even in the USA where there is an extensive support network called aHUS Source in place.
aHUS can take away freedoms that most people take for granted. Eculizumab means many of those freedoms are retained so the disease and all it entails does not control lives.
Ability to travel for work or play is one of those freedoms. There is very little information available in the public domain about travel support for aHUS patients needing eculizumab when travelling away from home but :-
The advent of ravulizumab, with its longer infusion intervals, could eliminate the need for short term away from home infusions and permit the travelling aHUS worker more flexibility in fitting treatment into a work schedule whether at home or abroad,