Posts Tagged ‘Democrats’

Heart Defects and the 2010 Midterms

November 8, 2010

With the recent victory by the Republican Party in the 2010 midterm elections, another, larger issue looms: The Republican Party ran on the promise to repeal the Affordable Care Act and replace it with other forms of health care reform. If they can’t do that (And most likely they can not), they will refuse to fund it. And with Republicans in control of House of Representatives – where all bills that allocate money originate – this is a threat they can make good on.

This is not good news at all for Congenital Heart Defect patients. The Congenital Heart Futures Act which was once a stand alone bill, was “folded” into the Affordable Care Act. So if the Affordable Care Act is repealed, there goes the Congenital Heart Futures Act. And if it is unfunded, the Congenital Heart provisions won’t be funded either. In an ironic twist, the sections dealing with Congenital Heart research and funding never were funded to start with. We wouldn’t have lost anything, because we never had anything to start with. Just words on a piece of paper.

Tell George Washington that the Declaration of Independence is just words on a piece of paper, and let me know how that goes for you.

We can go to Washington, meet with our legislators, and request funding, but there is no guarantee. Every other worthy cause will also be in DC, trying to make sure that they get their money, too. And since we were never funded in the first place, that puts us way down on the list. After all, if we never received any money at all, there must not be much to these heart problems. If it were serious, we’d be throwing cash at it! (They don’t call it an invisible disability for nothing, folks!)

The new legislators won’t take office until January 20, 2011, so we have a little time to prepare. We can’t really prepare a strategy yet, but we can get set in our minds what we are working for.

This isn’t a party issue. It is not Republicans vs. Democrats. People of all political walks have heart defects – an unborn child’s heart begins to develop early, and often the heart is forming before the mother even knows she is pregnant. This doesn’t benefit this side or that side, it benefits people. Because a house divided cannot stand, and a house united cannot fall.

This isn’t for us. This is for our children and their children. This is for the parents who sit in the Intensive Care Unit and fear that their child’s next breath may be the last one. This is for those who have to live with medication, scars, blood draws, and the knowledge that they are different, outsiders, alone.

A lot of people believe that Conservatives and Progressives are so far apart that they can’t even order lunch together. I choose not to believe that. I think we can all work together to bring Congenital Heart Defects under control and eventually condemn them to the dustbin of history.

Choose a side

June 3, 2010

I received two invitations via Facebook to “Like” a political party this week. I turned them both down.

I wholeheartedly believe in our system of government and I have voted in every election since I turned eighteen. I’ll vote for the candidate before I vote for the party, but I usually vote *COUGH*. (That’s a nice way of saying “I ain’t telling!”) But when I have the opportunity to discuss Congenital Heart Defects (CHDs) with government officials, I try not to get involved in partisan politics. The Funky Heart doesn’t support one political party over another.

In its early stages, a heart develops as a long straight tube – almost like a drinking straw. In a few days it is viable and actually starts to beat! Later, it rolls over to form a U shape and the U begins to grow together, forming the organ we have all come to know. If you are going to have a Congenital Heart Defect, this is when it begins. 124 out of 125 times the heart forms perfectly, but that one time – 1 out of 125 – there is an imperfection that leads to a heart defect. And all this occurs before your mother even knows she is pregnant. By the time your future mom goes to the doctor for the official confirmation, you could already have a Congenital Heart Defect.

That’s the reason I try to keep the Funky Heart politically neutral. Our government – from the federal government on down – is highly partisan right now. If you identify with THIS party,  you may not be able to build a relationship with members of THAT party. Both sides can have good ideas, and the voters can change the power alignment during any election.  So I feel that it is best to set my personal preferences aside and be able to work with members of any political party.

Newborn children obviously haven’t chosen a political affiliation. Both Republicans and Democrats have heart defects.  So do Independents, Libertarians, and even Green Party supporters. Even those people who choose not to vote at all are affected by them. So if you ask me to choose sides, that’s fine.

You can just count me with the people affected by a Heart Defect.


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!

The Plan

February 6, 2009

As of right now, the plans for Washington are set. They’re also flexible, so that I can liveblog the event for you and also get out and lobby, also. You may notice some changes as the day goes by and there could be long breaks when I’m not around my laptop, but we plan to do our best to keep you informed during Lobby Day.

To recap what is going on: On February 10, members of the National Congenital Heart Coalition will gather in Washington, DC to lobby members of Congress for a National Registry of Adult Congenital Heart Defect survivors. I’m going as a member of my CHD support group, the Adult Congenital Heart Association. (ACHA)

We’re aiming for a registry of adult survivors not only for the ACHA, but for everyone. Gathering data from adults means there is much more data available right away. We’ve had our surgeries and have taken the medications already. If the database were to rely on following children as they age, it could be 20 years or more before there is enough useful data. Gather that information from adults with a heart defect, and it’s ready to be used as soon as it is compiled.

I’ll be traveling to DC on February 9, and Lobby Day is February 10. We’ll gather in the Capitol Hill Club for a training session, and then we’ll board buses to the Capitol and lobby our legislators. I plan to work from the Capitol Hill Club as much as possible, interviewing attendees as they return from their lobbying sessions. I’ll post updates as they happen, so check Funky Heart throughout the day. We’ll be lobbying until 5:00 PM Eastern or later!

I plan to interview some of the Cardiologists who are there in depth, and talk to… well, anyone who will talk to me! Some things I’ll report as soon as they happen (“Jane Doe from Upside Down Hearts reports that Senator James Ironbottom pledged his support!”, for example) and some of the longer interviews, I’ll bring them home and transcribe the tape before they appear on Funky Heart. You’ll see them over the following days.

Kim from The CHD Blog will be there also, and hopefully she can take over for me when I have to be away.he may have plans to do some liveblogging also, I am not sure. Keep your eyes on The CHD Blog, too. If things get quiet for a while, just keep checking: I’ll be back! I’ll also be on Twitter for “snapshot updates.” If you want to read those you can follow me there, I’m funkyheart.

The exact schedule is still up in the air; I want to get out and lobby, and I also want to keep you informed. I’ll just have to keep an open mind and “roll with the flow!”

So pack your bags, the Funky Heart is off on another adventure, and you’re invited to come along!

Chronic Care in a new Healthcare System

January 25, 2009

Today’s entry is going to walk a fine line. I promised myself when I started this blog that I would not get political: after all, a Congenital Heart Defect develops long before a person’s political philosophy does. But there is an ill wind blowing…

Laurie Edwards over at A Chronic Dose has a great post on the need for chronic illness care. A healthy person’s need for usually has a finite beginning and ending date. They fall in the bathtub, for example, and break their leg. There’s a need for surgery and rehab and pain medication, but under normal circumstances that will end. The doctor will say that your leg looks good, there is no need to come back unless there is a problem. Chronic care patients, on the other hand, make continual trips to the well. Medications, treatments, supplies, the occasional hospitalization – the costs keep coming.

Lots of ideas are being tossed around for national health care reform. Kevin, MD contends that Medicare for all isn’t the answer. One reason, according to the Happy Hospitalist, is that FREE=MORE. Put a free soda pop dispenser on every floor of your hospital, and your customer satisfaction survey numbers go up! Dr. Wes agrees with Happy – give a little, and people tend to take a lot.

The Covert Rationing Blog thinks the decision has already been made, and we’ll eventually become a single payer system. The real fight is going to be if citizens are allowed to spend their own money to pursue healthcare. Apparently the answer is “no”… the State of Maryland is already considering  steps to make Private Pay illegal. Kevin, MD even goes so far as to call it “Health Care prohibition.”

When you are in control of the wallet, you get to choose what the money is spent on. Think about it – your child wants a piece of bubble gum, he comes running to you to ask for a quarter for the bubble gum machine. If you don’t want your child to have gum, you say no.

Mr. Government Health Man? Sir, I need to have my pacemaker replaced, the battery is running dry. Can I have a new one?

No, I’m afraid not. You see the doctor six times a year and you take 15 different medications. You’re draining the system. I’m sorry.

I’m draining the system? Mr. Government Health Man, Bill went to the doctor for pain in his ankle last year, and he had a bone scan, and an MRI, and X-Rays, just to prove that he had twisted it! I need my pacemaker, why don’t you go yell at Bill?

Obviously, these last paragraphs are an exaggeration. And I wish I was smart enough to say “This is the way you should reform health care…” but I have no idea where to even start.

But I know what scares me.