Posts Tagged ‘AHA’

Give them a break

April 1, 2010

I heard it again last night!

Every so often I’ll hear (or read on a blog) frustration or anger aimed at the American Heart Association. “The American Heart Association only allocates 2% of its funds (or 3%, or 1%… the number always seems to change) to Congenital Heart Defect research! This is a shame and disgrace!”

Umm… I hate to be the bearer of bad news, but that is not their job. As proof, I offer the Association’s own Mission Statement, copied from their website:

The American Heart Association is a national voluntary health agency whose mission is: “Building healthier lives, free of cardiovascular diseases and stroke.”

In fact, the American Heart Association deserves a pat on the back – even though they normally only work to eliminate cardiovascular disease and stroke, for many years they were the only Heart Advocacy group around. Because of this, their website maintains several good pages about Heart Defects (look HERE and HERE for two examples; there are other pages as well ); they offer a 64 page booklet titled If Your Child has a Congenital Heart Defect, and also has a good webpage for Adults living with a Heart Defect.

The American Heart Association controls the Legacy of Life Endowment, a national campaign to raise one million dollars for Congenital Heart research. Florida also has the American Heart Heroes, an Association program that helps sends kids with Heart Defects to Camp Boggy Creek, a camp for seriously ill children north of Orlando. Broken Hearts of the Big Bend, the great CHD Support group located in Tallahassee, works closely with the American Heart Heroes program. And you can designate a donation to the American Heart Association for CHD causes, with the assurance that is where it will go. Just write “For Congenital Heart Defect causes” or “Legacy of Life Endowment” on the memo line of your check.

The Big Red Heart plays hardball

March 2, 2010

Let’s take a short break from our usual adventures to take a quick look at what happens when you “break the rules”:

Certainly you’ve noticed that all the major news outlets seem to highlight the same health story at the same time. No, you aren’t crazy – this happens because of a News Embargo.

Here is how it works: A medical journal – lets call it the Journal of Smelly Feet (JSF) – has concluded a major study that shows that socks that are not regularly washed smell 37% worse than the average sock. So the JSF releases this study and its results to the press on a Wednesday afternoon – with the stipulation that this must not be broadcast or appear in print until 8:00 AM Eastern time Monday.

This gives interested journalists (and everyone is interested, the study is a major work) more time to read the research, gather comments from scientists involved in sock care, and write their stories. Monday at 8:00 AM, the embargo is lifted and everyone is free to publicize the story.

Despite this silly example, the embargo does serve a purpose: It allows science and medical reports to become full-fledged “News Events” rather than a few pages in an obscure journal that only a few people will read.

Everything usually works on the honor system, but what happens if someone breaks the embargo? Grabs the bull by the horns and runs with it?

Well, if the offended organization is the American Heart Association… the hammer falls!

The BIG PRESS RELEASE (and it was pretty big, a new study that found that both a stent and a surgical procedure can prevent a stroke) was embargoed until 8:30 AM; but someone at Reuters pressed the button an hour and 43 minutes too early and the story appeared on their website.

Whoops!

It wasn’t long before the jury delivered a guilty verdict and the judge spoke:

As a result of this embargo break, all Reuters reporters will be eliminated from our media distribution list, they will no longer have access to our embargoed newsroom where they can have access to our embargoed journal articles and we will not provide any interviews to any Reuters reporters for a period of 6 months. These sanctions will apply to the reporter who broke the embargo for a period of one year.

Wow! Those AHA folks don’t play.

So, this begs the question – what is Reuters going to do? Well in the “good old days” they could put their science reporters on the street, attending conferences, interviewing experts in the field and developing their own stories. In fact, the Journal of the American Medical Association (JAMA) “disciplined” a reporter who broke an embargo. The reporter contends that she did not break the embargo, she got a lead from a source and worked it into a story. Her “reward” for her hard work was a “Sucks to be you!” note from JAMA.

The problem is reality – with news organizations experiencing a decline in readership and ad sales, staffs have been cut. Most of those science reporters are gone; the few that are left are usually stuck behind their keyboards, writing whatever material they gather through press releases, email, and the fax machine.

So there is not as much research, not as much legwork, and the overall quality of medical and science reporting declines.


How many Children are born with a Heart Defect?

November 30, 2009

When I (or anyone else) speaks of the number of Congenital Heart Defect (CHD) cases in the United States, where do we get our numbers? And how do we know they are accurate?

An accurate estimate relies on two factors: Reliable numbers and good math. I usually start with the estimate provided by the American Heart Association. That number has changed recently: They now report that out of every 1000 births, 9 will have some form of Congenital Heart Disease. (1 defective heart per 111.111 births; 1000 divided by 9 equals 111.111) We can confirm that number by looking at data from other Heart Health organizations; in this case, most of the other prominent organizations – including the March of Dimes – contend that the correct number is 8 in 1000. (1 defective heart per 125 lives births; 1000 divided by 8 equals 125.0) So for the moment, we’ll stick with 8 in 1000, which is the number I have been using.

Which brings us to our first question: Why does the American Heart Association feel that the number is higher? Are there more heart defects occurring? Or are doctors getting better at detecting them? That’s a question I don’t have an answer for – and something to investigate later.

So if we accept that 8 children in 1000 are born with a CHD, how many is that per year? Now we need good math – The United States Bureau of the Census reports that on average, there is 1 birth every 7 seconds in the United States. Since we know there are 86,400 seconds in a day, there must be 12,343 people born every day. 12342.857 people to be exact, but since you can’t have 0.857 of a person, you round up all fractions.

8 out of every 1000 births can be converted to a decimal number: 0.008. Total number of births divided by the occurrence of heart defects (12,343 multiplied by 0.008) means there are an average of  99 people born every day with a heart defect. (98.744, to be exact)

Remember, we’re still assuming that 8 out of every 1000 births has a heart defect. Let’s assume for the moment that the American Heart Association is correct and say that 9 out of every 1000 live births has a CHD.

That doesn’t change the birth rate (1 every 7 seconds) or the number of seconds in a day (86,400), so we can still use those original numbers. The number of people born every day won’t change, it is still 12,343, and 9 in 1000 converts to 0.009, obviously. 12,343 multiplied by 0.009 equals 112 people per day. (111.087)

99 people vs. 112 people. The difference 1 person per 1000 can make is astounding.

Close encounters of the dental kind

July 31, 2009

It has been a busy week! Things don’t stop when you go out of town… I’m just now getting really caught up from my trip to Durham! I haven’t even unpacked my laptop bag; I need to get everything out and start charging batteries!

But Monday afternoon I had to stop for a while and go see my dentist, to write the final chapter of The Tooth Chronicles*. As usual, I took my antibiotics: The American Heart Association recommends that people with certain Congenital Heart Defects (press release with basic information) take antibiotics an hour before the dental appointment.  (Here’s the full report)

We do this in an effort to avoid Endocarditis. Endocarditis is an inflammation of the lining of the heart, and it usually attacks the heart valves. And since I have had it, I am a firm believer in taking my pills! Endocarditis put me in the hospital for seven weeks, getting IV antibiotics every minute of it. Well, except for a couple of hours…

I was slurring my speech, forgetting things that just happened, and dragging a foot when I walked – and I didn’t realize it. My parents became alarmed, naturally, and mentioned it to the doctor, who looked me over and decided that I needed to have the Neurologist drop by. The Neurologist decided pretty quickly that I needed an MRI.

So I was bundled up, shipped to a different hospital – this was the late 1980’s, there wasn’t an MRI machine on every corner back then – and they ran a scan of my head. Sure enough, there it was: a silver dollar sized cyst inside my brain.

My next stop was the Operating Room. Thankfully it was not very deep and pretty straightforward – the operation started about 3:00 PM and the surgeon made it home in time for dinner. I did come out of the OR looking like Kojak, though.

After that, there was two more weeks of IV antibiotics before I was able to go home. And as often happens with Endocarditis, there was really no way for sure to tell how I had gotten the bacteria. But it can occur when a CHD survivor has dental work, so I am careful to “dose up” before I see the dentist. And it was only later that I found out that Endocarditis can lead to heart valve damage – enough to need surgery to replace the valve – and can even kill you! So if you have to see the dentist, call your cardiologist first, and get a prescription for antibiotics if you need them.

* I have an overbite; over time, my lower teeth have worn down the back of that tooth and finally exposed the root. I got the root canal and went back to my local dentist for the follow-up. He felt that it would be better to bond it rather than insert a crown.

The Realities of the Situation

March 22, 2009

This may come as shocking news to some, but not everyone thinks that the Congenital Heart Futures Act is wonderful. They can find no good reason for it.

These guys, for example, think the Congenital Heart Futures act is “egregious”. A complete waste of time and money. And in a way, they have a point. If you are not affected by a Congenital Heart Defect or are not familiar with the costs involved, it very well may not make sense to you. And with the Stimulus plan and the bank bailouts, yet another expenditure for a disease may not seem like the best use of resources.

That’s why you need to be familiar with the facts. Estimates of the number of people living with a Heart Defect in the United States range from 2.1 million (the number I use) to 3.6 million. Two million, one hundred thousand people fighting a chronic disease generate an enormous amount of health costs. These costs fall both on private insurers AND on Medicare/Medicaid… so like it or not, every taxpayer gets to share our medical bills.

And when you consider those 2.1 million people grow an average of 5% a year due to medical advances allowing us to live longer lives, those costs are going nowhere but up.

As a personal example, I take eleven different medications a day. You probably just rocked back in your chair and thought “Eleven? Per DAY?!?!” – but that’s not the highest amount that I know of. I know other CHD Survivors who take more, and some who take less. (Mind you, we aren’t even considering the cost of surgeries and hospitalization, just medication.) But if the research and the registry created by the Congenital Heart Futures Act can eliminate one medication from a Survivor’s daily routine, the cost savings would be significant.

And what’s the cost of the Congenital Heart Futures Act? At Lobby Day 2009, it was estimated that the cost of the bill would be slightly less than twenty million dollars per year. $20,000,000 – a drop in the bucket!

But here is a dirty little secret you never anticipated: We have to fight other heart organizations, too!

According to the Wall Street Journal,

The group, however, wants more federal-research funding to go toward heart diseases, which cause more deaths in the U.S. than any other disease. The patient-advocacy group said heart disease is projected to rise by 16% each decade, and deaths from stroke are expected to double from 2000 to 2032.

The group said it worries that without comprehensive changes, reductions in heart-disease deaths over the past few decades may be erased.

The “group” that wants more federal funding is the Big Red Heart. And the Big Red Heart naturally feels that it is the best group to receive and allocate the extra funds.

The Journal article notes that the National Institutes of Health allocates $25 billion a year for medical research, but only 4% of that goes to heart studies.  So roughly a billion dollars a year, if my math is correct. So the “pie” of federal funding is a billion dollars each year, and if you are at the table when the pie is served, you get a  slice. And who doesn’t love pie?

Well, we aren’t at the table – yet. But since everyone loves pie, nobody is planning to share. “MY pie! Go bake your own!” Well, we would if we could, but this is where the pie is served, and we don’t want that much, anyway. But we’ve got to be at the table with a plate and a fork when the pie is served, or we go hungry.

And that is why your efforts, at the local level, are going to be so important.