1. Supported by Bon Voyage! Travelling with a bleeding disorder

2. PURPOSE Travelling is often an adventure filled with challenges, especially for people with bleeding disorders. With the right planning these challenges can usually be overcome. The goal of this module is to help people with bleeding disorders reduce the risks of travel so they can enjoy their adventure to its fullest.

3. 1. Travel CHALLENGES 2. Travel INSURANCE 3.INFORMATION to carry 4.PREPARATIONS with your treatment team 5.TRANSPORTING clotting factor CONCENTRATES 6.SPECIAL NEEDS 7.INFUSING EN ROUTE 8. Top 10 travelling TIPS BON VOYAGE ! TRAVELLING WITH A BLEEDING DISORDER

4. TRAVEL CHALLENGES CHALLENGES CHALLENGES FOR TRAVELLERS WITH BLEEDING DISORDERS  Getting through airport security and border crossings with factor products, needles and syringes.  Packing bulky clotting factor concentrates.  Ensuring you carry medical information.  Knowing where to find medical care.  Arranging for special travel needs.  Obtaining travel insurance.

5. TRAVEL INSURANCE BENEFITS … INSURANCE …  Strongly recommended outside Canada!  Pre-existing conditions may be covered unless, in the last 3 to 6 months, you… − consulted a physician (other than for a regular checkup); − were hospitalized; − were prescribed or received a new treatment or medication; − were prescribed a change to an existing treatment or medication.

6. TRAVEL INSURANCE BENEFITS … When applying for insurance, always tell the truth about your bleeding disorder. Failure to provide all health information will void any claim. INSURANCE

7. INFORMATION TO CARRY BENEFITS … INFORMATION TO CARRY …  FactorFirst or TreatFirst cards  MedicAlert bracelet or necklace  Letter of authorization from HTC to carry concentrates, needles and syringes, contact information for HTC. The letter, written in English, should include: − Name of patient − Description of medical disorder − Contact information for HTC − Name of physician − Type of medication − Types of supplies − Types of implants that might set off security alarms MEDICAL INFORMATION

8. BENEFITS … It is essential to have a list of all the hemophilia treatment centres (HTCs) on your itinerary. The World Federation of Hemophilia publishes an annual list of the HTCs in over 100 countries. INFORMATION TO CARRY INFORMATION TO CARRY … HTC s AROUND THE WORLD www.wfh.org

9. BENEFITS …  Emergency contacts at home  Your treatment centre contact information  Contact information for treatment centres on your route  Travel insurance provider information  Health insurance provider information Use the CHS Travel Card! INFORMATION TO CARRY EMERGENCY CONTACT INFORMATION

10. PREPARATIONS WITH TREATMENT TEAM BENEFITS … PREPARATIONS … 1.Should I take a dose of factor before boarding the plane? 2.Should I change my prophylaxis schedule or temporarily adopt a prophylaxis regime? 3.How many doses of my treatment (factor concentrate, desmopressin or antifibrinolytic) should I take? 4.How should I pack and store my medications? 5.How should I keep my infusion records while travelling? 6.Do I need to carry prescriptions for these medications? SOME OF THE QUESTIONS YOU NEED TO ASK :

11. PREPARATIONS WITH TREATMENT TEAM BENEFITS … 7.Should I bring analgesics with me and, if so, which ones? 8.Should I bring a First Aid kit with me and, if so, what should I put in it? 9.Do I need to see a travel clinic for vaccinations? 10.Should I contact the HTC at my destination before leaving home? 11.Should I sign a Release of Medical Records form at my HTC so my records can be forwarded to another health care facility if needed? 12.What should I do in an emergency? PREPARATIONS …

12. PREPARATIONS WITH TREATMENT TEAM BENEFITS … The Canadian Association of Nurses in Hemophilia Care (CANHC) has published a booklet called Planning Travel: A Guide for People with Bleeding Disorders PREPARATIONS …

13. TRANSPORTING CLOTTING FACTOR CONCENTRATES BENEFITS …  Check the package insert (or product monograph) for precise temperature storage instructions.  NEVER leave factor in the car in the hot sun!  NEVER put factor in your checked baggage!  If bulky, re-package vials, needles and syringes in special carrying case.  NEVER let the security agent touch your supplies without clean gloves. PREPARATIONS … TRANSPORTING FACTOR …

14. BENEFITS …  Carry a personalized letter.  Know the latest airport security rules.  Ensure the medication is properly labelled.  Declare medication separately from other liquids. TRANSPORTING CLOTTING FACTOR CONCENTRATES AIRPORT SECURITY TRANSPORTING FACTOR

15. SPECIAL NEEDS BENEFITS …  If you expect to need assistance at any airport on your itinerary, contact your airline, when possible at least 24 hours in advance.  Beware! Quality of service varies. SPECIAL NEEDS … MOBILITY ASSISTANCE

16. BENEFITS … By contacting your airline, it is possible to request a seat:  with movable armrests  close to the washrooms and exits  with extra legroom See www.seatguru.com SPECIAL NEEDS SPECIAL SEATING ON PLANES EXPRESS / PRIORITY LINES Airport security and even some tourist attractions have express/priority lines for people with mobility limitations. Just ask!

17. INFUSING EN ROUTE BENEFITS …  If you need to infuse on a train or plane, ask for a place where you have sufficient room and can concentrate.  In an airport, if you cannot find a quiet, suitable location to infuse, ask for help in finding a First Aid station.  If none of these suggestions work, find a table (as secluded as possible), lay out your supplies and give your infusion. There is no reason to be shy! INFUSING EN ROUTE …

18. INFUSING EN ROUTE  It is critical that “sharps”, that is, needles, be disposed of safely after use.  If you don’t have a “sharps” container, carefully replace the plastic guards on the needles and store them together inside another secure container. If your trip is short, bring them home to dispose of.  If your trip is longer, find a medical facility that will accept to dispose of them for you. Some airports have “sharps” containers in washrooms. INFUSING EN ROUTE … WHAT TO DO WITH “ SHARPS ”  Vials and syringes can be discarded in the regular waste disposal.

19. INFUSING EN ROUTE BENEFITS …  If you use a paper-based infusion record, take your forms along with you.  If you use an electronic or Web-based device, and can’t take it with you, make your own paper log. Record: − Date and time of infusion − Lot number − Number of units infused − Reason for infusion: Bleed (indicate site), prophylaxis or immune tolerance induction therapy. INFUSING EN ROUTE KEEPING INFUSION RECORDS IT IS JUST AS IMPORTANT TO KEEP GOOD INFUSION RECORDS WHILE TRAVELLING AS WHEN AT HOME.

20. TOP 10 TRAVELLING TIPS BENEFITS … 1.Discuss your travel plans with your treatment team. 2.Carry a personalized letter from your treatment centre describing what supplies you have and why you must carry them with you. 3.Carry an up-to-date FactorFirst or TreatFirst card. 4.Wear a MedicAlert necklace or bracelet. 5.Have a list of all the hemophilia treatment centres on your itinerary. 6.Carry several copies of your emergency contact information. 7.Obtain travel insurance, if possible. 8.Check the package insert (or product monograph) for precise instructions on the storage conditions of the product you use. 9.Never keep your medication in your checked luggage! Always keep it with you. 10.Keep good infusion records while travelling. TRAVELLING TIPS

21. ACKNOWLEDGEMENTS The CHS would like to acknowledge those people who contributed to the development of Navigating the emergency department. C LARE C ECCHINI National Program Manager, Canadian Hemophilia Society (retired) M YLENE D’F ANA Vice-President, Canadian Hemophilia Society D EB G UE, RN Nurse Coordinator, Hemophilia Program, Adult Division, St. Paul’s Hospital, Vancouver, BC A LEX L ITTLE Calgary, AB D AVID P AGE National Executive Director, Canadian Hemophilia Society N ORA S CHWETZ, RN Nurse Coordinator, Bleeding Disorders Program, Health Sciences Centre, Winnipeg, MB (retired)

22. Supported by Navigating the emergency department Charting your course Home care: The road to independence Destination fitness Roadmap for managing pain Bon Voyage! Travelling with a bleeding disorder