Posts Tagged ‘funding’

Five CHD Questions: Why?

May 13, 2010

Why are Congenital Heart Defects (CHDs) the least understood and the least funded of all the birth defects?

Despite being the birth defect with the highest rate of incidence, Congenital Heart Defects receive the least funding for research. One would think that this would be the target of massive funding, intense awareness campaigns, and major research allocations, but that is not so. In fact, it is one of the lowest.

CHDs is an “invisible disability” – we hide in plain sight. Other disabilities and illnesses have obvious signs, but the average CHDer can usually blend into a crowd with little trouble. Most of the time this is a good thing; I personally don’t prefer to stand out. One thing I write about on this blog and occasionally mention in a presentation is look at me – see how normal I am! But that also works against us as we can become lost in the shuffle.

When I was born there was no such thing as pre-natal testing; I was born on a Tuesday but it was Friday before my mother realized that there was probably something seriously wrong with me. Even today, a Fetal Echocardiogram is not standard procedure: an expectant mother normally receives this test only if her family has a history of heart defects or other factors come into play.

Despite what you may hear or read on the internet, CHDs are more survivable today than at any time in the past. A minimum of 90% of all children in the United States who undergo heart surgery survive to adulthood. And every year, the odds tilt more and more in our favor. There are currently about one million adults living with a Heart Defect and about 800,000 children.

With almost two million people living with a CHD, we’ve become our own little world. Survivors represent every gender, every race, and every age group. This diversity has led to advocacy groups of all types, such as the Adult Congenital Heart Association (ACHA), Hypoplastic Right Hearts (HRH), and Broken Hearts of the Big Bend. Every Survivor/Advocacy group serves a segment of our community and each one fills a need.

The members of the Congenital Heart Defect community are many and varied. But the one thing all segments of the CHD family needs is more awareness and better research. Because the goal of every Survivor/Advocacy group is to cease operations  because there is no need for their services anymore.

We’ll get there one day;

C.H.D. in the USA!

April 18, 2010

Sung to the tune of R.O.C.K. in the USA by John Cougar Mellencamp

They come from the cities

And they come from the smaller towns

From all walks of life

With hearts that go

Crack! Boom! Bam!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Yeah, Yeah!

Fighting for the U.S.A.!


Said goodbye to their families

Said goodbye to their friends

With pipe dreams in their heads

And very little money in their hands

Some are black and some are white

Headin’ to DC to set things right

Solid as a rock with our eyes on the prize

‘Cause we’re gonna be…

Fighting CHD in the U.S.A!

Hey!


Voices from nowhere

And voices from the larger towns

A head full of dreams

Gonna turn the world upside down

There were people with stenosis, pig valves, and Fallot

(They were fightin’!)

Bad aortas, switched vessels, ASDs,  Cardiomyopathy

(They were fightin’!)

Spotlight on the HLHS team

And don’t forget the Funky Heart!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting CHD in the U.S.A!

Fighting for the U.S.A!

HEY!

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.

Invest in a Cardiac Kid’s Future

March 31, 2010

You’ve seen the TV ad in which the guy says “You can pay me now or you can pay me later!” The implication is that you can pay a reasonable amount now, to protect your car, or pay a lot more later, when the car breaks down and needs major repairs.

That’s the theory behind the push for funding for the Congenital Heart Futures Act (CHFA). As mentioned yesterday, Section 425 (C) authorized the provisions of the CHFA, but does not fund it.To put it bluntly, we need some cash.

During the Lobby Day 2009 event we looked for sponsors for the Congenital Heart Futures Act and asked for twelve million dollars annually to fund it. Let’s assume that this year, our goal is fifteen million dollars per year until the Act expires in 2015 – a total of seventy-five million dollars.

$75,000,000 – that’s a lot of money.

But consider the cost of Congenital Heart Defect care. A 1994 study estimated that the cost per CHD patient under 21 years old varied from $47,500 to $73,600. And remember, that study is 16 years old! The Utah Birth Defect Network estimated a lifetime cost of $1.2 billion dollars for Congenital Cardiac care – and they were only looking at children born with certain defects ( Tetralogy of Fallot, Transposition of the Great Arteries, Single Ventricle Defects, and Truncus Arteriosus) during the study year. And a 2008 study estimates that the costs of hospitalization for adults with Congenital Heart Defects to be 3.1 billion dollars.

So let’s fund the Congenital Heart Futures Act. Activate the National Congenital Heart Disease Surveillance System. Expand CHD research. (Don’t let anyone tell you that there isn’t any Congenital Heart Defect research going on; there is. Click HERE for a list of current Clinical Trials or HERE for the U.S. National Library of Medicine. Just type “Congenital Heart Disease” in the search box).

Funding the Act could lead to improvements in all our lives, but especially for the Cardiac Kids. If we can make surgery a little easier to deal with, replace a surgery with a Catheterization procedure, or reduce the number of medications we have to take, funding the Congenital Heart Futures Act won’t be an expenditure – it will be an investment!

$75,000,000 vs. $3,100,000,000.

You can pay me now, or you can pay me later.

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.

Resources for tracking the Congenital Heart Futures Act

March 21, 2009

House Version of Congenital Heart Futures Act on OpenCongress.org.

House Version on Politics4All.

Senate Version of Congenital Heart Futures Act on OpenCongress.org.

Senate Version on Politics4All.

While OpenCongress and Politics4All each have advantages and disadvantages, Politics4All seems to be slightly better. It was on Politics4All that I learned that the House version of the bill has picked up two additional co-sponsors: Betty Sutton and Charles A. Wilson, both Democrats from Ohio. THREE Ohio Representatives are now openly supporting the Congenital Heart Futures Act!

Text of the Congenital Heart Futures Act

March 19, 2009

“Something’s going to happen… something wonderful!” – Dave Bowman, from the movie 2010: The Year we make Contact

The Text of the Senate version of the Congenital Heart Futures Act is now online and can be read by clicking THIS LINK.

Let’s look at some of the highlights:

(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention and in collaboration with appropriate congenital heart disease patient organizations and professional organizations, may directly or through grants, cooperative agreements, or contracts to eligible entities conduct, support, and promote a comprehensive public education and awareness campaign to increase public and medical community awareness regarding congenital heart disease, including the need for life-long treatment of congenital heart disease survivors.

This paragraph authorizes the Centers for Disease Control (CDC) to develop and fund educational programs designed to increase the awareness of Congenital Heart Defects. Does this mean that once the Act passes, you’ll start seeing more news reports and stories about people living with a Heart Defect? Possibly. Some of the educational material will certainly be aimed at all physicians, and not just Cardiologists. CDC will certainly try to educate doctors about the telltale signs of a Heart Defect – possible Cyanosis, low pulseOx, unusual EKG readings, and difficulty feeding, among others – and bring them up to speed on what to do to get that child advanced medical care. Teaching a General Practitioner in a small town in Utah what to do if a child presents with CHD symptoms is probably more important than educating a prominent Cardiologist about the latest genetic causes of CHDs.

`(1) enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a comprehensive, nationwide registry of actual occurrences of congenital heart disease, to be known as the `National Congenital Heart Disease Registry’; or (2) award a grant to one eligible entity to undertake the activities described in paragraph (1).

This section authorizes the creation of a national registry of CHD survivors. Believe it or not, no national tracking system exists now. What would such a registry record?

The Congenital Heart Disease Registry–

(1) may include information concerning the incidence and prevalence of congenital heart disease in the United States;

(2) may be used to collect and store data on congenital heart disease, including data concerning–

(A) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease;

(B) risk factors associated with the disease;

(C) causation of the disease;

(D) treatment approaches; and

(E) outcome measures, such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for congenital heart disease patients; and

(3) may ensure the collection and analysis of longitudinal data related to individuals of all ages with congenital heart disease, including infants, young children, adolescents, and adults of all ages, including the elderly.

Research will produce a lot of numbers: How many people in this state are affected, what age range, their race, income level of their parents when they are born. Perhaps these numbers will point us to a “subset” of people that seems to be highly susceptible to occurrences of CHD. If it does, public health officials can then concentrate on two activities: 1) Getting expectant mothers out of that subset; and 2) Provide expanded health services to the group. If you can’t prevent a Heart Defect nor can you change the environment, then at least be ready to provide excellent medical care if needed.

The Director of the Institute may expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease, which may include congenital heart disease research with respect to–

(1) causation of congenital heart disease, including genetic causes;

(2) long-term outcomes in individuals with congenital heart disease, including infants, children, teenagers, adults, and elderly individuals;

(3) diagnosis, treatment, and prevention;

(4) studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with congenital heart disease; and

(5) identifying barriers to life-long care for individuals with congenital heart disease.

The best surveillance system and medical care is really just a waste of money and time if no one is trying to figure out why Congenital Heart Defects occur. It’s like running around with a bucket of water, pouring it on a house fire. What you need in this situation isn’t a bucket of water – you need the fire department! This section of the bill is our 911 call… help is on the way!

Point 4 is the key. Used in combination with the national registry, this research can point out what treatment options work best, and those that don’t. After the registry database is built up, procedures and medications won’t be “hit or miss” any more. The research will show what medications and witch surgical procedures work for certain defects… and witch ones don’t.

Money will be saved.

Invasive procedures will not take such a toll on the patient.

And our Cardiac Kids will slowly morph into happy, healthy Heart Warriors.