Posts Tagged ‘Congenital Heart Futures Act’

What comes next

March 20, 2009

“The mark of a good team,” Green Bay Packers coach Vince Lombardi once said, “is the ability to win on the road.”

Well, Vince would be proud. Heart Defect survivors, parents, and Cardiologists must be a good team, because we played the ultimate road game. We went into the jungle known as Congress and with the introduction of the Congenital Heart Futures Act, we won.

Trouble is, the only thing we won was a trip to the playoffs. We’re playing in the Big Leagues now, gang. We were just a group of interested amateurs, working for an admirable cause. Now that we actually have legislation under consideration and a voice at the table, this time we’re for real.

So we need to step up.

Have you received an email from one of the Congenital Heart Defect Advocacy groups yet? Most of them have sent them out to their members and friends, but if you haven’t, here’s what you need to do:

Get the contact information for both of your Senators and your member of the House of Representatives. Get the information for both their Washington offices and their local offices.

Sit down and write each one of them a letter. Be polite and courteous, and be sure to say that you are asking them to co-sponsor the Congenital Heart Futures Act if possible, and to support it if/when it comes to a vote. You must use the bill number, the act is known as H.R. 1570 on the House side and S. 621 in the Senate. Tell them why the Act is important to you – personal stories work well. Are you a Heart Mom with a Cardiac Kid who always seems to be ill? An Adult Survivor? A Cardiologist? Give details, but be concise. Your letter should not be over one page long. Now, mail that letter!

Step Two: Sit down at your computer and compose a similar e-mail. Don’t copy your mailed letter word for word, but approach the issue from a different angle. For example, tell them how much your medication costs per month, and your hopes that the Act can eventually reduce the number of medication that you require. Again, use the bill numbers! Now type in the correct e-mail address and hit SEND.

Now, for your third task: Find out where that local office is. Is it nearby? Once a week, (and sometimes more often than that) one of the Legislator’s staffers will be in the office. Find out when he/she is there, make an appointment if you need to, and go to the office! This time, you’re expressing your support in person, so you have to be calm, cool and collected. Your best behavior is required, and use your indoor voice. In a famous TV ad, Shaft would threaten to “turn this place into a parking lot!” if he didn’t get what he wanted. But that won’t work here! (This city has enough parking spaces, the cop will say as they lead you away!)

And be prepared to repeat these actions at a later date, when the Act hits the floor for a vote or there is a chance it could be altered. Get yourself on the mailing list of one of the national CHD groups; they will let their members know when action is needed.

Congratulations! You have now done 80% more than the average concerned citizen! And with your dedication, the Congenital Heart Futures Act has a much better chance of passing.

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.

News of the Day

March 5, 2009

Blog Carnival: The Blog Carnival is on! If you wish to participate, please write a post on the subject “The gifts and challenges of a Congenital Heart Defect.” Post it on your blog and send me a link at ! The final day for submissions is March 21, 2009.

There is positive movement on the Congenital Heart Futures Act! As you may remember, members of the Adult Congenital Heart Association (ACHA) and other CHD groups lobbied Congress for sponsors for the Act, and we may have some positive movement on the issue! However… I gave my word that I wouldn’t write anything until it was official, so I can’t tell you yet. But I will as soon as I can!

Light the fires and kick the tires! The Funky Heart is traveling again! The trip is still in the future (and in the planning stages) so right now I’ll just give you little hints: Horace Greeley told me what to do, and I’ll be in John’s old stomping grounds. If I get to see some baseball, perhaps I’ll get lucky and see some good pitching. I’d love to see a pitcher get ten strikeouts! Any guesses? (Some of you know, so your guess doesn’t count!)

Former First Lady Barbara Bush had Aortic Valve Replacement surgery today and at last report is doing well. President Bush (#41) had some snappy comments at the press conference today but nearly broke down when talking about the surgical team. Like him or loathe him, it’s easy to see that President Bush loves his First Lady.

Robin Williams will also need to have his Aortic Valve replaced. Best of luck to ya, Robin. May you bounce back quickly and make us all laugh again very soon!

We’ve talked before about USB- based Electronic Health Records (EHR), but it looks like they may be out the window. Some medical facilities have even blocked their computers’ USB ports, in an effort to prevent forgetful staff from accidentally plugging one into the system. Running around the hospital sticking little plastic plugs into every USB port you can find… I wonder if that pays well? *sigh* I’m so used to carrying my USB that I feel naked without it, but it looks like it is back to the drawing board.

Stand and be Counted

October 15, 2008

Well it is official – I am registered to participate in the Adult Congenital Heart Association’s (ACHA) Lobby Day 2009! During my first Lobby Day (2007), it was Just ACHA members (patients and health professionals) with assistance from the American College of Cardiology (ACC). The ACC sponsored the event and provided us guidance on how to approach a lobbying effort. The ACHA has no professional lobbyists; if we want something done, it’s up to us to do it!

There were 74 ACHA members from 19 states, and we were able to visit the offices of 83 of our legislators. The issue we pressed was the creation of a national registry of Adult Congenital Heart Defect (ACHD) patients. By gathering and studying information on adult survivors of CHD, better treatment options can be developed that will benefit everyone with a Heart Defect and allow all of us to live longer, healthier lives.

We won the battle, but lost the war. The Registry was inserted into the Federal Budget, but political moves delayed passing the budget until almost the last possible moment. When it was finally passed, the budget had been “stripped” – most of the extra spending (including ACHA’s request for the Registry) had been deleted.

That was two years ago – before ACHA helped create the National Congenital Heart Coalition. I don’t really know what to expect this time. Members from other groups in the Coalition will almost certainly join us, and I assume (and we all know what can happen when you assume things) that our focal point of our efforts will be passage of the Congenital Heart Futures Act. During our interview, ACHA President Amy Verstappen told me that the Act was still a work in progress. I have not seen a copy of the Act, and by the time it is ready to be submitted, that may not even be its title.

So what can you do? If you are an adult with a Congenital Heart Defect, join ACHA. Membership is free to patients and their families, and if possible prepare to join us in Washington. If you are a Heart Mom or Heart Dad, ask your local CHD support group if they are members of the National Congenital Heart Coalition and if they want their members to attend Lobby Day. If they say no, ask them why not? Ask your group leaders to get in touch with the ACHA main office (the phone number is on the website; go to the bottom of any page) and request information about joining the Coalition and attending Lobby Day 2009.