Posts Tagged ‘Legislation’

Thank you!

April 25, 2010

Thank you for being a friend
Traveled down the road and back again
Your heart is true you’re a pal and a confidant

Thank You for Being a Friend, Andrew Gold (1978)

A very big THANK YOU to the people who helped make Lobby Day 2010 such a wonderful experience:

Amy Verstappen, President of the Adult Congenital Heart Association (ACHA), and her husband Richard; my wonderful hosts and tour guides;

Anna, Fatima, and Nicole; all members of the ACHA Office Staff who welcomed me and put me to work;

Amy Basken; who works for several Congenital Heart Defect (CHD) organizations, serves as ACHA’s Advocacy Director, and coordinated most of our Lobby Day activities;

Molly Nicholson of the American College of Cardiology; for her work in helping this bill become a law and also for her friendship;

Paula Miller, a great friend and fellow heart warrior who accompanied me on two of my legislative visits;

Dr. Mike McConnell, my Cardiologist at Emory University in Atlanta, and my partner on my third legislative visit;

And especially to all 150+ CHDers and Advocates who brought their message to Capitol Hill!


September 30, 2009

Yep – the Congenital Heart Futures Act is getting steamrolled, and there isn’t a heck of a lot we can do about it.

Health Care Reform is pretty much THE topic of discussion in the halls of Congress these days. Nothing else matters, everything else is off the table until the Health Care issue is settled. I don’t know enough about Congressional procedure to know if a bill “expires”, so I don’t know if we’ll have to trek back to Washington and lobby for it again. My contact person who would know these things is on vacation; she deserves a break, her organization just finished a major meeting and lobbying effort of their own. Like the McDonald’s advertisment, she deserves a break today!

But if it turns out that we have to get in there and do it again, count me in! And I’ll take my laptop with me and bring Funky Heart readers along for the ride. And hopefully we’ll answer the question, How many funky hearts does it take to move Congress?

But what I am worried about is the aftermath of the Health Care Reform debate. Battle lines are being drawn and it looks like both sides are getting ready for a fight. I’m concerned that after the reform effort the atmosphere  is going to be so toxic, that nothing even remotely connected to health care will seriously be considered. And that could leave us out in the cold – for quite a while. And we don’t need that to happen.

But that’s why mechanics explore junkyards – sometimes a part borrowed from that wrecked clunker is exactly what you need to rebuild that dream car and make it run. Our surgeons cut us open, looked at our defective hearts, and figured out a way to made them work correctly. It ain’t perfect, and some of us seem to be held together with “baling wire and  bubble gum” – but we’re still going!

We’ve been down this road before, and if we have to, we’ll piece something together and make it work!

They aren’t trying to kill you, just tax you to death

May 18, 2009

They are determined to get you coming and going – The Colorado House of Representatives recently passed a “Sick Tax“! But you’ll never see it – in fact the legislation allows the cost to be “hidden” in your hospital bill, not included in an itemized list.

We seem to have it backwards – rather than trying to encourage all Americans to pursue a healthy lifestyle, our government entities want to encourage unhealthy behavior – and then tax it to pay for healthcare! For example, Federal lawmakers want more taxes on alcohol and tobacco. Ummm… wouldn’t it seem that if you did what you could to protect your health, healthcare costs should go down? But hospitals have no real incentive to prevent readmission by promoting wellness – that’s a fast way to lose money.

There is even a move to add a tax on soda and other sugary drinks. Former President Bill Clinton says that is not the way to reduce childhood obesity, but rather focus on preventing obesity and promoting wellness. His Alliance for a Healthier Generation is doing just that by setting guidelines for beverages sold in schools. You want to cut obesity in school aged children? Limit the number of calories they take in. How do you do that? Start stocking the vending machines with water (0 Calories) and low calorie juices and diet drinks. You can still sell Coke and Pepsi – just reduce the size of the container. You’ve seen those 8 ounce cans, I’m sure.

No matter what happens in the healthcare debate, the best way to cut you own personal costs is to take care of yourself. Start an exercise program, with your doctor’s permission. Don’t drink to excess. Don’t make the bacon triple cheeseburger with fries and a pickle your main lunch choice.

Enjoy your life by living it to the fullest!

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.

What a day it has been!

March 18, 2009


Today has been a thrill a minute… The phone hasn’t stopped ringing. E-mails have been flying back and forth.

Senator Durbin is introducing the bill today!

Has he done it yet? There’s nothing on THOMAS (The Library of Congress’ website that catalogs Congressional legislation)

No, not today…

Yeah, today! In fact, there’s a press release on the Senator’s website!

Still nothing on THOMAS! What’s the press release say? Do you have a link?

Anything on C-SPAN?

C-SPAN?!?! It’s just being introduced, let’s not get ahead of ourselves!

In the middle of the afternoon I was at wit’s end, and I needed to back away for a moment. So I shut down the computer, took the phones off the hook, hid my cell phone, and stretched out for a few moments.

And I got to thinking about it: If we get this thing rammed through Congress, then there isn’t going to be any more children like me, way out in the middle of nowhere with no idea what is going on inside of their body.

No more 500 mile drives to a hospital for a checkup.

No more parents wondering if this cold is going to turn into something that their child can’t fight off.

I thought about meeting so many adults with CHDs in Philadelphia, and how many of them had felt just like I had — all alone. And now I have dozens of new friends, and they all know how I feel about them, because we’ve all been there. We still Walk a Difficult Path, but now we know that there are others out there, too. And I thought about that day just a few weeks ago when 200 of us hit DC like a Kansas tornado.  And the new friends I met there, too.

But what a day it has been! A wonderful day! OUR day. So for tonight’s party the group is Bond, in a live performance.  We’ve all got to get back to work tomorrow, but tonight, let’s shake the house!

The song is just for us: Victory!


March 18, 2009

In the words of the great Paul Harvey:

“Good Morning America! Stand by for news!”

If you remember our postings of February 10, the Funky Heart traveled to Washington, DC to join with other Congenital Heart Defect (CHD) Survivors and our Cardiologists to lobby for the Congenital Heart Futures Act.

At 9:33 AM Eastern Time this morning, Adventures of a Funky Heart! received word that the Congenital Heart Futures Act has been introduced in both the House and the Senate! The Senate sponsors are Dick Durbin (D-IL) and Thad Cochran (R-MS); on the House side the sponsors are Zachary Space (D-OH) and Gus Bilirakis (R-FL). The official press release from Senator Durbin’s office is HERE. The Children’s Heart Foundation has a press release HERE.

The Senate Bill is S. 621 and the House version is H.R. 1570. The text of the bill has not been posted yet, I will link to it when it is available. There are also certain to be other press releases and comments from CHD organization leaders available, I will also link to them.

A Personal Mission: Molly Nichelson, American College of Cardiology

February 15, 2009

Molly Nichelson is an Issues Advocate for the American College of
(ACC) in Washington, DC. Part of the ACC’s Federal
Grassroots Outreach, her usual job involves helping members of the
American College of Cardiology become involved in political issues. But on Lobby Day 2009 her assignment was more difficult: Molly had to
transform 200+ Congenital Heart Defect Survivors, Cardiologists, and
their families into CHD Advocates, then turn them loose in the halls
of Congress.

Lucky for us, Heart Defect issues are her passion. Molly’s sister was
born with a Congenital Heart Defect, Coarctation of the Thoracic
, along with transversed organs. Despite these challenges,
Molly’s sister has survived two open heart surgeries and at age 27 has
a child and is “doing great!”

“As far as my own family was concerned, it was a lifestyle change for
us, making sure we watched her, hypertension issues, but through
medical intervention she’s really doing fantastic,” the proud sister
and aunt says. “The medical advances are astounding. So for me, our
family views a lot of physicians as heroes.”

“I’ve worked in government relations all my life,” Molly continues.
“When I first started with the American College of Cardiology it was a
passion of mine to work with people with Congenital Heart issues. It’s
something I’ve been doing ever since.”

Growing up in a family affected by a Congenital Heart Defect, she
understands the best way to guide a Cardiac Kid. “As a sister of
someone who has a heart defect, I would say don’t treat them [children with Congenital Heart Defects] any differently. That was an important thing growing up, she can achieve a lot of great things. She has a child, a family, a great career, and a lot of it is due in part to really wonderful, caring, passionate doctors. I like to think that the American College of Cardiology is a great home for fantastic physicians who are  really passionate and really care about their patients.”

Molly’s attitude becomes more businesslike as she discusses an
upcoming issue facing Americans: “It’s going to be very important for
patients to keep abreast of what’s happening on Capitol Hill,” she
advises. “Read your newspaper, keep following up, see what
associations like the American College of Cardiology and different
organizations are doing in regard to health care reform. Stay engaged,
read a lot, and learn about what is going on.”

Good advice, from someone who is in a position to know… and obviously cares.