The inconvenient truth about health care

I’ve spent the last few days becoming increasingly angry. This happens when I spend too much time with the inconvenient truths of cancer in general and carcinoid/NETs in particular. Our health care system in this country is broken on many different levels. Carcinoid/NETs is the poster child for that fact.

…it kills them as surely and as painfully as any other cancer you can name.

The most visible failure is with the way we pay for health care in the US. But it extends into every level of the system, from how we train doctors to how we treat them to how we deal with patients in offices and hospitals. On days like this, I am amazed we manage to diagnose and cure anything without killing and bankrupting every single patient.

An inconvenient truth about the past

Say what you want about Obamacare–and believe me, I have plenty of problems with it–it is a huge improvement over what we had in place before its passage. A serious illness–like cancer–can still eat every nickel you have before its done if you choose the wrong insurance policy. But the insurance companies no longer get to play the pre-existing condition card. Nor can they say to you in mid-treatment, “Sorry, but you’ve reached your lifetime or annual benefit limit.”

I’ve spent the last few days becoming increasingly angry.

No one in his or her right mind wants to go back to the insurance circus before those two changes were made–at least no one facing a serious injury or illness. I won’t be happy until we have an intelligent single-payer system like the rest of the industrialized world has. But what we have now is a small step in the right direction.

The inconvenient truth about insurance

But for patients generally–and carcinoid patients in particular–it is only a small step. Insurance companies still balk at paying for drugs used off-label or deemed experimental–even if you’ve paid for a rider that covers drug trials. Last week, I saw a story on TV about a man in the mid-west who only got his insurance company to honor his trials rider after getting the TV station involved. How many others that insurance company has done something similar to is not on the record. Maybe this is the only time it happened. Maybe it isn’t.

‘Sorry, but you’ve reached your lifetime or annual benefit limit.’

I’ve talked with someone else in Ohio whose drug company doesn’t want to pay for his Octreotide prescription. I suspect it is because its use, while common in carcinoid/NETs patients, is sometimes viewed as off-label. The drug was originally developed to help other cancer patients deal with the nausea and diarrhea of certain chemotherapy treatments in the 1990s. Octreotide also alleviates the symptoms of carcinoid syndrome for many–though not all–carcinoid patients. But it was not developed to do that.

The inconvenient truth about financial support

I wish what goes on with insurance companies were the only inconvenient truth carcinoid/NETs–or any–patients had to deal with. But there are other things that can break the bank financially for patients that no insurance policy will ever cover. Last week, I wrote a long piece on what kinds of resources exist for cancer patients. I outlined ways of dealing with the costs of travel and lodging that are especially a problem for carcinoid/NETs patients.

The drug was originally developed to help other cancer patients…

But while some of those programs are not income or wealth dependent, many programs are. As one patient pointed out, in too many cases you have to be destitute before many programs will talk to you. And even the ones that will talk to you have too few resources to be able to help everyone. The American Cancer Society, for example, only has so many volunteer drivers, only so many rooms in Hope Lodges, only so many gas cards they can dole out in a given year.

The inconvenient truth about charity

The inconvenient truth is no charity raises enough money to meet the needs of all the people who need help. Every time I hear a politician talk about relying more on private donations than government aid–about letting the private sector deal with these kinds of problems, I want to scream.

…in too many cases you have to be destitute before many programs will talk to you.

People are as generous as they can be–even in the current ongoing economic difficulties. As someone whose fundraising is entirely dependent on small donors–our average donation is about $25, and we receive lots of $1, $5 and $10 donations–I know how difficult every dollar is to come by–and what each of those dollars means both to the donors and the patients and researchers who rely on them. But the need far exceeds the resources.

The inconvenient truth about government support

When those resources are not enough, people have to turn to the government for help. They have nowhere else to go. But again, when the demand is too great and we don’t want to raise taxes, the need for help grossly outweighs the supply of help available. For patients, that means less help putting food on the table or keeping a roof over their heads.

…the need far exceeds the resources.

On the research side, it means the supply of research dollars flows to whoever has the most political pull. And carcinoid/NETs has precious little political pull. We spend billions on cancer research in this country each year. But between 1968 and 2008 we spent no federal money on carcinoid/NETs. Since 2011, the US government has spent about $1 million a year on carcinoid/NETs–enough to fund two research projects–whose budgets have been cut every year by the sequester.

The inconvenient truth about medical education

But the inconvenient truth is money is not the only problem we face. To say we have historically done a poor job of educating doctors about carcinoid/NETs would be to damn with faint praise. We diagnose about 3500 cases of cystic fibrosis a year. We diagnose about 11,000 cases of Lou Gehrig’s disease (ALS) every year. Yet you won’t find many doctors who have never heard of either one. We diagnose 12-15,000 cases of carcinoid/NETs a year, but finding a doctor who has heard of it before he or she sees a case is difficult.

…the supply of research dollars flows to whoever has the most political pull…

Part of that is the incredible public awareness campaigns foundations for both CF and ALS have done over the years. Part of it is the impact CF has on children and their families. Part of it is the fame of Yankee Lou Gehrig who was struck down young–and very visibly–by ALS. But part of it is also that these zebras have gotten more than a passing reference in medical school curricula. Medical schools are only now beginning to talk about carcinoid/NETs in any detail. But in-service training programs for doctors on carcinoid/NETs are few and far between.

The inconvenient truth about patient care

As a result, carcinoid/NETs patients are told they are “lucky” to have carcinoid/NETs; that it really isn’t a cancer; that its symptoms are easy to manage; that it is easy to cure; that the surgeon got it all. Spend an hour talking to patients and you will hear more diagnostic and treatment horror stories than you would believe.

But the inconvenient truth is money is not the only problem we face.

Worse, patients have to count on other patients for reliable information about their disease. Even oncologists who are unfamiliar with the disease make the most incredible gaffs in talking about the disease. They don’t understand that, to quote Dr. Eric Liu, one of the experts in the field, “When you’ve seen one case of carcinoid, you’ve seen one case.”

Patients and the inconvenient truths

I love carcinoid/NETs patients. They are wonderful, caring, remarkable people who are forced by the circumstances of their disease to earn the equivalent of a Ph.D in the subject on the fly. They experiment with black raspberry powder to control their diarrhea, cruise the internet looking for research studies from both here and abroad, and share their personal experiences with the disease without hesitation.

‘When you’ve seen one case of carcinoid, you’ve seen one case.’

The specialists in the field–and there are only a double handful of them in the US–listen to what the patients are telling them, treat them as fellow researchers who might actually have a clue what they are talking about, knowing that the search for a cure for this disease at this moment in time is very much a two-way street.

The inconvenient truths about non-specialists

But there are the non-specialists who really believe that because they have seen the major cancers and how they work that they understand all cancers, including this truly bizarre and peculiar nastiness. They tell their patients, sometimes, to shun support groups and anything they see written about carcinoid/NETs–even if it is written by one of those specialists who really understand the disease and are good at explaining it in layman’s terms.

I love carcinoid/NETs patients.

The inconvenient truth is carcinoid/NETs is not like any form of cancer any of us could imagine. The primary tumors don’t spread very fast, but they breed daughter tumors like rabbits. The daughters don’t grow very fast either, but their small size makes them tough to detect. And that growth habit that tempts doctors to see them as no big deal, makes them immune to all the traditional chemo and radio-therapies.

The inconvenient truths about carcinoid/NETs

Add to that their propensity to produce hormones and peptides to screw up the body’s internal chemistry in deadly ways and you have a cancer that is, perhaps, far more life-altering than the better known cancers that look more dangerous and deadly.

…they breed daughter tumors like rabbits.

The inconvenient truth is this cancer–for which we have no cure–maims patients in ways people don’t like to talk about. And when it has maimed a patient as completely as possible, it kills them as surely and as painfully as any other cancer you can name.