Traveling for Treatment
Note: This Article Applies To US Patients. Similar Options May Be Available Elsewhere
If you research your options, you may well find that you are going to have to travel to get treatment of your choice. This is particularly true if you’re going for a clinical trial not available near where you live, or if you need treatment from a world-class expert, or an exotic procedure done in only a few locations.
The thought of travel may be intimidating particularly if you don’t have much money. The good news is that it is almost always possible to find a way around a shortage of money. This article will show you how for air travel, driving, child care, lodging and… even taxes.
I traveled coast to coast for my treatment in a clinical trial in San Francisco three times and stayed for about a month each time and I’ve included my experiences in this article. It was certainly an adventure to travel while very ill, and I am grateful for all the help I got from family and friends. And I will confess despite the difficulties, I took every opportunity to enjoy the Bay Area I could.
Location, Location, Location… You May Have a Choice!
Before getting into how to travel let’s talk about where to travel. If you are traveling to take part in a clinical trial, you may have a choice of several locations and you might be able to save money or have a better experience by choosing wisely. Keep in mind that most trials are multi-center trials. Some trials have dozens of locations. Some centers may be more convenient to you than others. You may have friends and relatives in some cities, some cities might be less expensive or more pleasant than others or have better patient assistance available. In a few cases, hospitals may even offer financial assistance for travel lodging or treatment. Clinical trials at the US National Institutes of Health is an important example.
Of course, the cheapest deal isn’t usually the best way to decide on a cancer treatment center. Especially if the treatment is technically difficult you want to be in expert hands and if at all possible that should be your first consideration.
My Experience: In my case, the consulting oncologist at Mass General Hospital who offered me an adjuvant clinical trial failed to tell me I could have gotten treated in the same trial closer to home than his hospital even though I’m pretty sure he know I was from out of town. You may be more fortunate than I was but it pays to check.
I didn’t do the adjuvant trial in part because I relapsed before I had the chance. The early phase I trial I did take part in was multi-center as well, and it turned out this was important. The closest center, where my doctor had referred me, was only an hour’s drive, but they couldn’t take me for a month and I had rapidly advancing disease and couldn’t wait that long. My doctor had given me a copy of a “Dear Colleague” letter about the trial which listed several other sites. I called until I found one that could take me in only a few days, The University of California, San Francisco. It was on the other side of the country, but at that point time was more important than distance. Incidentally, one of the other sites, the City of Hope, said they could offer financial assistance for treatment if my insurance wouldn’t cover.
Driving and Child Care
If driving moderate distances for travel is a problem for you, check your local American Cancer Society as well as hospital social services, The United Way, as well as local city and county social services departments. There are programs in many areas where volunteers will drive you to treatment. Your church may also be able to help. Although child care while you are away for treatment is a totally different issue, it turns out single parents who need to travel for treatment can very likely get childcare help from the same sources.
My Experience: On my last trip to San Francisco, my then future wife, Ellen, and her 8 year old daughter, Jamie, came with me. For the most intensive part of my treatment we were able to find a short term day care through hospital social services so Ellen could be with me in the hospital during the day.
A good friend of mine in the Bay Area happened to have an old car he didn’t use much and was kind enough to lend me. While I used public transport and the hospital shuttle most of the time in the city, having a car allowed me to take several interesting trips to surrounding areas (Including Yosemite National Park) when I felt well enough.
There is a vast array of options for air travel for cancer patients for free or at reduced rates. These include:
- Free flights on corporate jets.
- Short-Medium distance flights in small planes with volunteer pilots. This can be a substitute for what otherwise would be a long taxing drive.
- Free flights using donated airline miles
- Special rates or flexibility from airlines
- Air Ambulance service for critically ill patients
Furthermore, you can be quite sick and still fly on commercial airline flights. This includes people who require a wheel chair and even who require oxygen. On some planes it’s possible to bring a wheelchair right to a seat. It may be necessary to make special arrangements with the airlines in extreme cases. I recently saw a man taken to the gate flat on his back on a stretcher, although presumably he had to sit up for the duration of the flight. Critically ill patients can be flown by Air Ambulance either covered by insurance or sometimes on a charitable basis.
Air Travel Resources:
- PatientTravel.org is a clearinghouse which offers everything from referrals to special programs offered by the airlines, to free flights, to scheduling Air Ambulance flights. Call their hotline for help with air travel.
- Corporate Angel Network arranges for free flights for cancer patients on corporate jets.
My Experience: For most of my air travel, I took regular commercial airline flights. During the early stages of my treatment I used the airport wheel chair service. I could have struggled to walk the long distances to the gates but at that point felt it would be counterproductive. As I got better I didn’t need a wheelchair. The return flight was always an issue since we could never be completely sure if we could go back on the scheduled day. My doctor provided a note I could use to ask the airline to give me a break, though there was no guarantee they would.
Before my last trip to San Francisco, my mother found an article about Corporate Angel Network, so I signed up. It was quite an experience. I ended up flying coast to coast in a GulfStream corporate jet with George Lucas. Talk about Using The Force!
Finally, some years ago I helped arrange a charitable Air Ambulance flight for a critically ill teenager using . They were fast and efficient.
There are several options for lodging which may help you:
- Hospital Social Services: Every hospital has a social services department and most major hospitals make special arrangements with nearby hotels for lodging at relatively reasonable rates.
- American Cancer Society Programs: The American Cancer Society has a variety of programs to assist patients with lodging, ranging from free or reduced rate rooms at hotels to “Hope Lodges” they run specifically to help patients. Availability varies depending on where you’re going. Call the ACS at 1-800-ACS-2345 for more information. Note that their website does not (August 2004) completely describe their programs; you need to call.
- Hospitality Houses: These are lodgings specifically for seriously ill patients and their supporters who have to travel for treatment. They may be small inns or frequently rooms in people’s houses, or sometimes facilities specially built for this purpose. Cost ranges from free to very low.
- National Association of Hospitality Houses
- Fisher Houses, provide free or very low cost lodging to military families (including veterans) getting treatment at military medical centers and also assist with travel.
- Ronald McDonald Houses provide free or low cost housing to the families of seriously ill children during cancer treatment. They are affiliated with McDonald’s restaurants.
- Friends and Relatives: Obviously if you have friends or relatives where you’re going to be treated who are willing to help that solves the problem. Even if they can’t put you up they may know of good places to stay.
Tip: Look for weekly or monthly rates if you’re paying for a hotel or motel. If you stay more than a couple of days or a couple of weeks you may save quite a bit by reserving for a whole week or month. There is some risk if your plans might change depending on results of tests or medical consultations at the hospital you’re visiting.
My Experience: I found out the American Cancer Society had a lodging program in San Francisco but I decided not do it because although it was a free room in one of the fanciest hotels in the city, it was only available on weekdays. It was also likely to be a small room and I wasn’t sure there’d be space for both my Mom and I when I wasn’t in the hospital. ACS programs vary from place to place and over time so don’t let my 1990 experience discourage you.
On our first trip, my mother arranged for us to stay with a friend of hers for the first few days in San Francisco on very short notice but, as we were imposing, we moved to a great place my mother got through hospital social services. The Beach Boy Motel was only $50 a night for two huge rooms with (very important) a small kitchen. My appetite was greatly affected by both the disease and the treatment and when I did feel like I could eat it was often at odd hours and with no notice. It was great to be able to get something anytime. The Beach Boy was also close to (surprise) the beach as well as Candlestick Park which were great places to walk to get my strength back and ease my mind. They also had a nifty shuttle service to and from the hospital. The only snag was that the second floor room required climbing a flight of stairs which was a bit of a struggle at times.
As I checked out on my last visit, I realized although the nightly rate I’d been paying was a good deal, I could have paid much less if I had reserved for a month and paid the monthly rate, but they wouldn’t let me change it retroactively.
Insurance Coverage for Travel
Long after I completed my treatment, I noticed my insurance company would have actually paid some of my travel costs. But I hadn’t checked my plan and so I lost out. While I strongly suspect insurance benefits are less generous now than they were in 1989, it’s still worth checking your plan to see if you have any coverage for medically necessary travel.
Itemized Deduction: You can deduct the portion of your medical costs which exceed a percentage of your adjusted gross income (currently a rather cruel 7.5%) then you can deduct. This includes travel costs as well as much else, and it’s likely you’d need to add up all your unreimbursed medical costs to reach the threshold. Travel costs include lodging, meals, and transportation including driving expenses. If your medical expenses overall are high or your income is low you may be able to take this as an itemized deduction.
Archer Medical Savings Account (MSA): An MSA allows you to make tax- deductible contributions to a special account and then receive tax-free distribution of qualified medical expenses. These are the same expenses as I discussed for Itemized Deductions above and include travel expenses. The MSA is only available to people to have a high deductible medical insurance plan. If you have one of these plans, setting up an MSA is an option and a smart move for almost any cancer patient. Check with your employer or insurance plan. If you already have an MSA, you should strongly consider funding it to the maximum amount allowed.
This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: August 12, 2004, Last Updated: August 12, 2004