The carcinoid/NETs litany

My insurance company won’t pay for my octreotide prescription. Where do I find $64,000 a month for that?

I need to go to Vanderbilt to see a carcinoid specialist treatments. It’s 500 miles away? How do I pay to get there? 

I can’t get PRRT treatments locally–and the specialist says I need them. But my insurance probably won’t pay for the treatments, let alone a place to stay for a month.

It’s hard enough to fight this cancer–why do I have to fight the insurance company, too. I think they hope I’ll just up and die so they won’t have to pay for it.

Help me stay alive: go to my GoFundMe page and make a donation.

Beggary and the cancer ward

Every day I read variations on the above themes. That last one is particularly galling. We live in the richest nation on earth and cancer patients have to sit on virtual street corners with tin cups in their hands begging for help to pay their medical bills. Some put jars in their local stores–a few literally panhandle on the streets like homeless people, hoping against hope that somehow they will fight their way clear.

There is no way to cover everything that is out there…

When they die, too often their families end up filing for bankruptcy, losing everything they had to the carcinoid maw that devours everything in its path.

We all pay the price

It makes me insanely angry every time I see one of those posts. We need to fix the healthcare debacle in this country that turns cancer patients into beggars. But that is not going to happen in the next two years. The political will to do something to make radical changes in the system does not exist.

We live in the richest nation on earth…

So this article is not going to turn into a rant about the shortcomings of Obamacare or the efforts of the Republican Party to turn back even those modest reforms. That won’t help those people struggling to make ends meet while facing carcinoid/NETs or some other form of cancer.

Paying patient support forward

There are groups and organizations out there working to help patients get the treatments they need, get the travel they need, get the lodging they need and the drugs they need in spite of government gridlock and corporate greed.

It makes me insanely angry every time I see one of those posts.

The first stop on your cancer journey is a name most people already know: the American Cancer Society. The ACS is about a lot more than research. In fact, the vast majority of the money ACS raises goes into patient support services, not research. If you need a ride to treatment, for example, there is Road to Recovery. They coordinate a network of volunteers who drive patients to treatments free of charge. In some areas, they actually run buses on specific days to large cancer centers.

No pay to stay

While they don’t arrange travel to cancer centers at a great distance from your home, the ACS can supply a place to stay for an extended period of time through the Hope Lodges once you get there.  These are not flea-bag hotels in dangerous neighborhoods. They are extended stay facilities designed with the needs of cancer patients and their families in mind.

The ACS is about a lot more than research.

 

There are 30 of these scattered around the country in close proximity to major cancer centers with 20 more in the planning stages. You can stay there for as long as you need to–and they won’t charge you a dime for it. And there is one near most of the major carcinoid/NETS programs across the country.

Help with getting insurance to pay

The ACS offers two different things to help patients deal with insurance and financial issues. The first, and more useful,  of these is the Health Insurance Assistance Program. That group within ACS deals with patients who are having issues with their insurance–or the lack of it.

These are not flea-bag hotels…

 

The second is a series of posts and articles on insurance and financial issues cancer patients and their families may confront during their battle with cancer. The pieces are very informative and written in easy to understand language. But the entire weight of the process ends up in the hands of the patient or their immediate family if that is the only device you avail yourself of. Patients and families need to focus more on the cancer than they do on the financial issues. Still, the background those pieces provide can be very useful.

Paying for the day-to-day

ACS also functions as a clearing house for information about non-ACS financial aid programs for patients and families struggling with cancer ranging from help with day-to-day living expenses to mortgage help.

…the background those pieces provide can be very useful.

Carcinoid/NETS patients can get some financial help for treatment specifically from the Lois Merrill Foundation. They give small grants to individual patients based on an application process. Those grants are only made once a year. Applications are due no later than June 20 and awards are announced shortly thereafter. The average grant is less than $2000.  That may not seem like much, but every dollar counts.

When it pays to travel…

For carcinoid/NETS patients in particular, treatment often means having to travel great distances–and air travel is expensive. The National Patient Travel Center functions as a clearinghouse for many different kinds of long distance travel for those with medical needs that cannot be addressed locally. They staff a full-time help center that evaluates a patient’s situation and sets up what is available for them. They also can help with ground travel up to 250 miles.

Applications are due no later than June 20…

Southwest Airlines’ announcement in March about free flights to Vanderbilt made a huge splash in the carcinoid/NETS community because Vanderbilt has one of the best carcinoid/NETS centers in the US. What quickly got lost in that announcement was that Southwest has a medical travel program that goes anywhere they fly to the tune of $2.8 million a year. Patients should check with the cancer center they need to get to see whether they are part of the program. If they are not, they have until September 30 to apply for this year’s program.

Other airlines may also have similar programs. Check with them. Most, however, seem aimed primarily at children with medical issues.

The price of drugs

Another potentially major expense for cancer patients generally–and carcinoid/NETS patients in particular–is prescription drugs. Jane and I were stunned to discover a single month supply of a minimal dose of Octreotide was over $58,000 in 2010. Fortunately, we had a platinum insurance policy that left us with a $40 co-pay. We had argued about the expense of that policy every year, but had finally concluded it was worth the price, just in case something awful did happen. And then it did.

Southwest has a medical travel program that goes anywhere they fly…

Not everyone makes that decision–or can afford to make it. Some of the oral medications currently in trials would not have been covered by even our insurance policy. We would have found a way to pay for them: money matters little in a life-or-death situation. But there are other options.

Help to pay for drugs

Nearly every drug company has a program that makes their drugs available at reduced or no cost for people who lack insurance or who cannot afford to pay for a drug they need. The RxAssist Patient Assistance Program has a list of guidelines for some of these programs.

Not everyone makes that decision–or can afford to make it.

Novartis, which manufactures both Octreotide and Sandostatin LAR, two of the standard drugs used to treat carcinoid/NETS, as well as Afinitor, which is used in pNETS, has a patient assistance program for users of its drugs that patients should look into.

A number of foundations also offer help with co-pays.

Trying to reach the bottom line

There is no way to cover everything that is out there to help patients with the financial problems they face in a single short article–and I’m sure I have missed some things people will want or need to know. But this should give you some good places to start as you figure out how to pay the financial price of the battle you face without resorting to begging on the real or virtual streets.

Nearly every drug company has a program…

And if I’ve missed something–either in terms of a financial issue or a place offering real solutions–please let me know. I’ll try to cover those items in a future article.