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When a Medication Is Off Label

Almost every medication used to treat a symptom of MS is prescribed off label. This means that the U.S. Food & Drug Administration ruled the drug safe and effective for another medical condition, but did not specifically approve it for use with MS. For instance, beta blockers are approved for treatment of high blood pressure and migraines, but they also help to reduce some tremors. Doctors often use these medicines “off label” to treat tremors in MS. Generic forms are available, so they are often covered by insurance companies.

In the case of medications that do not have generic forms (such as Provigil for fatigue), insurance providers may not cover their use. “It comes down to how expensive a medication is,” said Dr. George Garmany of Associated Neurologists of Boulder, Colo. “It’s usually not an issue when there is a generic equivalent for a drug.”

The Expense Factor

But why are so many medications that are effective for MS symptoms not approved for that use?

“It costs a lot of money for drug companies to do the studies,” Dr. Garmany explained. “Once the drug is approved for its primary use, the company may not wish to cover the additional expense of trials to show that it is effective in MS.”

The Right Diagnosis

Some symptoms of MS, such as depression, may allow for on-label use. “Depression is depression,” Dr. Garmany said. “The fact that someone has MS only modifies the way the depression is expressed. And if a patient has a legitimate diagnosis that would allow for on-label use, the doctor is best off using that.”

Covering Your Costs

1. Ask your healthcare provider if there is a generic equivalent.
2. If there isn’t one, or your health-care provider feels the off-label drug is best for you, file an appeal if insurance won’t cover it. “Every insurance plan must provide for an appeal of any ‘adverse determination’ made by the plan, including at least two levels of appeal,” said Kim Calder, director of Insurance Initiatives for the Society. The Society can help. Visit nationalMSsociety.org/insuranceappeals.

We also have a toolkit of appeal letters for doctors that relate to commonly prescribed off-label treatments for MS. Visit nationalmssociety.org/appealtoolkit or contact us.

Nutrition SOS

By Denise Nowack, RD

It’s summertime when storms, fires or power shortages might strike. Experts recommend being prepared with a 3-day supply of food and water.

What Does A 3-Day Supply Look Like?

Let the Food Pyramid be your guide.

• Bread, cereals, grains: Pretzels, ready-to-eat cereals, granola bars, rice or popcorn cakes, boxed couscous, noodles in a cup or packaged ramen.
• Fruits: Canned fruit, fruit roll-ups, applesauce, dried fruits, bottled fruit juices, powdered juice drinks.
• Vegetables: Canned vegetables and soups, bottled vegetable juice, instant potatoes.
• Meat, poultry, fish, dry beans, nuts: Canned meats, tuna lunch packets, canned lentil/bean soups, chili or stews, sardines, canned beans, dried jerky, peanut butter, canned nuts.
• Milk, cheese, dairy: Powdered or canned evaporated milk, boxed soy milk, process cheese, snack cup puddings.

Choosing the Right Foods

1. Look for foods you like to eat! Familiar foods will provide a sense of comfort in stressful times.
2. Look for foods that are “shelf stable.” These include cans, dried mixes and items that require no refrigeration. Seal cookies and crackers in a plastic bag or container.
3. Should you lose power, you’ll need items that are ready to eat. Canned foods don’t really require cooking even if they’d taste better hot. Consider small cans that provide just the amount you might consume at one time.

If The Power Goes Out

A charcoal or propane grill or camp stove can be used for emergency cooking but be sure to use these outdoors. Candle warmers, chafing dishes, and fondue pots can also heat foods. If you do not have an alternative way to heat water, don’t include instant foods in your supplies.

Storage Tips

Pack your foods in a container that can be carried easily out of your home in an emergency. Store in a cool, dry place and date with a marker. Rotate with a fresh supply every 6 –12 months.

Remember Water

Store at least one gallon per person per day for drinking, food prep and hygiene. Date and rotate water supplies every 6 months.

And Essential Supplies

Manual can /bottle opener, resealable plastic bags, paper plates, disposable eating utensils, trash bags, and matches in a waterproof container.

Don’t Forget Pets!

They need 3 days of food and water too.

Denise Nowack is a registered dietician and executive vice president of Chapter Programs at the Southern California Chapter.

Not Insured?

The Society has posted helpful information on its Web site called Resources for the Uninsured and Underinsured.

Learn what to do if there’s an emergency, how to get prescription drug help and explore links to the hundreds of federally funded family health-care centers across the country that provide care even if you have no health insurance. Family health-care centers vary significantly, but can provide services such as check-ups, immunizations, dental care, mental-health services and substance abuse care. Many free family health-care centers are also good resources for how to apply for federally sponsored programs, like Medicaid.

Click on nationalMSsociety.org/researchinsurance. And call for help from an MS Navigator at 1-800-344-4867.

Rolling through Jaffa Gate

By Louisa Kasdon

Jerusalem, June 2009…. Rolling through the Jaffa Gate, towards the pink, jewel of Israel: the Old City. For millennia, the must-see, must-conquer destination. A small plot of holy and historical real estate, revered by Jews, Christians, and Moslems. The most contested, few acres on earth. Who wouldn’t fantasize about being here? With our without MS?

Like all the best fantasies, we knew it was a reach. Jerusalem seemed an impenetrable destination for me and for my husband Michael. Michael’s MS means that he can walk with two canes, but slowly and gingerly, eyeing cobblestones and slippery spots with trepidation. The specter of ancient Jerusalem’s narrow, and uneven streets, with limestone pavers worn down by centuries of awestruck pedestrians and pilgrims… I just couldn’t imagine how we could do it. All the things that made Jerusalem a destination of our dreams––made the prospect of a visit there daunting at best. But we wanted to go. We’re not particularly religious, or even attached to the same religion, but how could we hope to understand the world today without trying to decipher Israel?

Then, by chance, my internet-surfing son-in-law discovered the Caddy. A small, foldable electric scooter, compact enough to fit in the trunk of almost any car or taxi, light enough to be lifted by reasonably sized people (i.e. me). The Caddy is one of a series of electric scooters developed by ingenious Israeli engineers at the Kibbutz Afikim in Northern Israel. The scooter was a practical wrench & bolts solution to the problem of how to shuttle elderly kibbutz residents between homes and the dining hall. We found a rental company (run by Miguel Hass, a Mexican- born Israeli who has polio. Disabled himself, he tried one of the scooters, delighted in how it opened up his life, and launched a small business for travelers with disabilities. My friends, it was a miracle. How appropriate for a visit to Jerusalem and Israel.

With Michael perched on his snazzy Israeli scooter, we did it all. With the Caddy , we were nimble enough to navigate the cool alleyways of the Arab market, powerful enough to pilot us through the quiet morning streets of the Armenian Quarter, and assertive enough to get us into the Church of the Holy Sepulchre, where priests of every denomination and pilgrims of every color and flavor, all jostle for their private moment inside. We picked our way through the Cardo, sniffing like bloodhounds at the scents of cardamom and cumin coming in small puffs from the spice stalls. We rolled close enough to touch the Western Wall, and to make an amazed stop at the Dome of the Rock and the Al Aksa Mosque, marveling over the idea that you could throw a fastball from one religion’s most holy site to the othe’s.

We spent a week in Israel, most of it in Jerusalem, sightseeing, eating, and shopping. Because we wanted to make the most of our time, we hired a private guide for the first three days, Muki Jankelowitz, a native South African who emigrated to Israel in his late teens. Muki recommended we spend Day One in Jerusalem, absorbing Israel’s past and present conundrum; Day Two in very urban Tel Aviv, focusing on the origins of the Zionism; and Day Three at Masada and the Dead Sea, (where yes, we did bob in the famous bouncy water).

Muki quickly became handicap savvy, thinking through best entry and exit points with the scooter, maneuvering us through ancient sites around the country so that we hit ramps and open spaces instead of stairs and crevices. Truthfully, with the Caddy, the task of making Israel Michael-friendly was not very difficult. Some locations were more challenging – Mike couldn’t quite get high enough to see the Dead Sea Scrolls at the Israel Museum’s Shrine of the Book, but that was the only real no-go in a packed tourism schedule. And in a few places in the Old City, Michael had to dismount while Muki and I carried the scooter up a few stone steps. When we were on our own, our hotel called us a taxi––not a special taxi, just a taxi––and the Caddy nestled comfortably in the trunk, with the joint effort of the cabbie and me. Our only problem came when I flagged down a taxi to take us to a restaurant, and the Arabic speaking driver took us to an Arab café deep in East Jerusalem, en route to Ramallah. Michael was in a funk of anxiety, mute with anger at me for agreeing to a dinner destination ripe with potential for crisis and kidnapping. We did get curious looks as we strolled in, but the food was great, super cheap, and the cab driver waited for us outside. I knew he wouldn’t leave. His potential tip was larger than the cost of the meal.

At Masada, we took the cable car, at the Jerusalem Symphony concert, we took the elevator, and at the Dead Sea we ditched the beach and opted for one of the series of Miami style spa hotels rimming the beach that offered a dip in a pool with water piped in from the Dead Sea – and lunch. (Lousy buffet lunch in a dining room overflowing with noisy Russians oldsters, and the pool area was a tad slippery. But still we did it, and we were glad, and we have the photos to prove it.)

We ate well, but not splendidly, Israel tending towards casual cafes and open-air pizza parlors more than white tablecloths. We tried to master the wrist flick & dip maneuver with fresh pita peculiar to hummus-gulping Israelis. Hummus here, hummus there, hummus, hummus everywhere. And at every meal, including breakfast, we feasted on huge amounts of fresh salad with heaps of local Israeli tomatoes. (Better than even my memories of my grandfather’s vines.)

We got it. The history. The spirituality. The politics. The anxiety. And the joy. Muki’s gifts as a historian and a storyteller allowed our conversations to burrow deep, and twist back on themselves with the complexities that are the fascination of a visit to Israel. Visiting Israel isn’t just another travel notch on the wish list of places to see before you die. It’s not Paris, Rome, or London. It is an excursion into your own logic and spirit. It is a destination that demands intellectual engagement, regardless of your religious and political beliefs. Late into the night in bed at our Turkish-style hotel, The Mount Zion Hotel overlooking the Valley of Death and Mount of Olives, we’d find ourselves arguing about decisions made over 2000 years ago.

You too can go to Israel. With a little logistical planning, a good guide, and a nifty mobility device, you can see all the sites that anyone hopes to see. And return home energized with a keen, almost heartbreaking sense of why Jerusalem and Israel matter so much to the world, and why the path to peace is so elusive.

If you go:

• Flying in: The Ben Gurion Airport is very sensitive to the needs of handicapped travelers. El AL is the national airlines and has a seamless service for passengers who need mobility assistance. Assistants will meet you at the plane, get you through customs, collect your luggage and hail you a cab. They will not accept tips.
• Where to stay: Two good options in Jerusalem are the Inbal Hotel and the Mount Zion Hotel. Both have elevators, handicapped accessible rooms (although one’s man’s idea of a handicap accessible is not another’s), and friendly staff. Mount Zion is cozier, and has the more charming view; the Inbal is more cushy and modern and has a much better pool area for people with challenges.
• Where to eat: Almost anywhere. Food is safe and cheap. Two good restaurants: in Jerusalem, The Colony is excellent. In the old Port of Tel Aviv, Boyo is a first rate seaside restaurant.
• What to do: In Jerusalem: Visit the Old City, the Holocaust Museum at Yad Vashem, the Israel Museum (especially for the open-air model of the Old City of Jerusalem during the Second Tempe Period), browse the Arab Markets, and the shops on Ben Yehuda.
• Peak points: the view from Mount Scopus; The Western Wall in early morning; cocktails on the terrace of the King David Hotel just as the Jerusalem stone turns pink with the last light of day; and listening the Al Aksa Mosque as the muezzins call the faithful to prayer.
• What to buy: Great handmade jewelry in Israel, and lots of religious keepsakes. You won’t lack for souvenir options.

Useful websites:

There are several good websites for accessible travel in Jerusalem. One of the best can be accessed thorugh the Israel MS Society: www.mssociety.org.il/tour/english/en_tourjeru.htm