Well, thanks

So we have "health care."
I've written a lot about it on this blog. I'll try to go through the archives and pull the most relevant stuff over the next day or so. But if you're a long-time reader, you know this isn't good for kids with CF, or really any chronic disease. I am NOT happy with this decision on multiple levels,  but mostly because this will negatively impact the CF population.
We don't live that long to begin with. We don't need Congress making our lives even shorter.

UPDATE:
we can start here, with CF in Ireland.
And in Australia.

Seven Quick Takes Friday--Vol. XIX

(we'll see how long I can keep up those roman numerals...)

I.
The Madness has begun! Do you have a bracket? At this moment, the Panthers (my favorite college team) are playing Oakland in Milwaukee, and winning right before the half. Let's hope this remains true. They were scaring me a bit in the beginning. 

II. 

Spring, spring, spring! Are you happy? I am!

III.

Things that make me not happy--this health care debate. I've got a post on it over at CPG.

Nothing this big has ever been passed in single-party fashion. Nothing. That makes me very, very nervous. 

IV.

Voice yesterday was great; Robin was very pleased. And when the teacher is pleased, I am pleased. I'm working on "Woman" from The Pirate Queen, "Live Out Loud" from A Little Princess, "Where Is Love?" from Oliver! and an Italian arietta. All of them are fantastic pieces. 

V.

What I'm reading: FinishedThe Scarlet and the Black: The True Story of Monsignor Hugh O Flaherty, Hero of the Vatican Undergroundand Song for Nagasaki. Both very good, S&B better than SFN. Also both WWII books. So I guess I'm on a kick there. Especially since I read Anne Frank: The Book, The Life, The Afterlife earlier this week. Definite trend. The Anne Frank book was good, but really only if you're familiar with the diary editions, the plays, and the movies. Otherwise it can be too nit-picky and specialized. 

VI. 

St. Patrick's Day at St. Pat's was awesome! Read about it here.

VII. 

Don't have a seven. So it's a six. :) Enjoy the weekend!

Head over to Jen's for more quick takes!

Bionic Ear 101: Hearing aids and the CI

Me and Suze at the pool in Houston. You can see the CI dangling under my left ear. 

Regular blog readers are familiar with my bionic ear (AKA, cochlear implant). I've had it for almost four years now. I'm sure that lots of people who had never heard of CIs before they met me are learning that there is a difference between a traditional hearing aid (or "listening device") and a CI. But for the record I'd like to list some of them here, so that if you ever do meet me (or someone else) with either one, you'll know what's going on.

First, I wasn't born Deaf. I lost my hearing due to a group of drugs that I took as part of my CF treatment plan, and then, post transplant, to fight a nasty infection I contracted in winter 2006-2007. These were intravenous treatments. I started noticing hearing loss in college, and, as we increased the doses of these meds, the hearing loss also increased. But, at the time, the choice was hear or die. So I chose to not hear so well and still be alive.

I received hearing aids in 2005, post-transplant, but the quality was never very great. I had behind-the-ear models, which allow for the most sound magnification. I had them in both ears.

Hearing aids amplify sound. That's it. In my case, the inner ear cells had been destroyed, so amplifying the sound didn't really help. I still had problems making out certain sounds, hearing in noisy environments, etc. So we began the CI process once it was determined that my hearing loss was profound enough to merit CI usage.

Since I was "post-lingual" (Meaning I knew how to talk and knew what normal speech sounded like) and had only had severe hearing loss for a short amount of time, I wouldn't need therapy post surgery. Some people do.

The most immediate difference between a CI and a hearing aid is that a CI is implanted--part of it is permanent--while a hearing aid is not. A CI is two pieces--the external processor (what you see in the picture) and an internal part. The two parts are attached via magnet (it's hidden under my hair, but you can see it on boys).

(In this pic-the outside part. The girl can hide it under her hair.) 

The interior part is a little tricky to understand:

That is what's in my head. The "tail" part is wound into the cochlea (hence, the name), which, (briefly) is a set of 22 electrodes that transmit sound information to my brain. Essentially, the old ear structure is bypassed, and I am deaf (for all intents and purposes) in my left ear without the CI. This is one reason I was resistant to getting the implant--I didn't want to lose whatever real residual hearing I had left, because no matter how great the CI, it's never as good as natural hearing. 

So, that's what the implant looks like, and that's how it works. You can see the difference between a traditional hearing aid and a CI in quality--one just amplifies sound, the other helps you understand it. It also has several different channels for music, loud situations, etc. I can plug my iPod into it (There's a special adapter cord. It sort of rocks my world.). 

A CI is great--but it's only as great as you make it. You have to train yourself to set the sensitivity (how much the mic picks up incidentially) and the program that's best for you. When I first got it, I went back to my audiologist at different intervals to have the electrode settings adjusted. Now I have a program that is usually used for music, but I use it all the time, because I get a richer sound.  You will do better if you experiment with programs and tell your audiologist what you are hearing, and what you'd LIKE to be hearing. And the younger you are, and the more "verbal" you were before, the better. I was a musician before--I'm a musician after. My ears were SO important to me. And now, I work hard at bringing myself up to "normal" standards. I've found the CI pitches me sharp, which is very rare in the vocal world--most people are flat, if they're having pitch problems. I have to listen even more carefully than the average singer. Instrumental music I've never heard before is very difficult for me--it just sounds like noise at first. Vocal music isn't so hard, but I have a hard time discerning words if I don't have liner notes to work with as well. (So people--give me liner notes!) 

CIs are also somewhat better on the phone, because the CI mic is directed at the phone. I have a special program (called telecoil) that I use when I'm on the phone. I have to push a button to activate it, so that's why it takes me slightly longer to pick up! My cell phone is compatible with both hearing aids AND CIs--not all are. The same is true for landlines. My phone at work has a special component that helps with the sound quality. 

I do not have bilaterial CIs.  My right ear has about 20% natural hearing, and I'm glad it does, so that when my CI battery goes dead, or it's out when I'm in the pool, shower, or sleeping, I can still hear things, and discern some voices. I can sleep with the CI in, but you DO need to charge the battery every so often! They are good for about 18 hours at a go. I have two. There is a fifteen minute warning "beep" that tells you to change the battery before it goes dead. 

So this is probably more than you ever wanted to know about hearing aids and CIs, but I think it's an important thing to cover. CIs are becoming more common, and people need to know how they work. 

I DO know ASL, but that was a complete fluke--I added it as an elective in high school for two years. I'm fairly good at signing, and will use it when I have to. My little sister also took an ASL course, and my ENT knows some sign. So also take ASL courses, if you can! It's so useful. 

If you have any additional questions, post them in the com box and I'll answer them (If I can). 

Saving Lives

AS you may expect, I have the utmost respect for doctors, nurses, and all of those in the medical profession. What they do, day in and day out, is save lives. It's not easy, and they're not perfect, but I am here because of some fantastic medical and mental work.

That's not to say that doctors are perfect. I've met some that are complete...well, fill in the blank. They're people, not God. Some are fantastic, some are average, and some have the bedside manner of a cobra. I'm able to overlook personality issues if the doctor is fantastic at what s/he does. (Fortunately, 99% of my doctors are lovely people.) When my life is on the line, these are the people I trust to do what they have to do to keep me here.

And, again, that doesn't mean there haven't been mistakes. There's the burn on my right arm, which required the skin graft. It was a mistake. But you know, doctors are human. They make mistakes. And, in the long run, it doesn't affect me in any way but cosmetically (and who cares?). They saved my life. Rather be alive with one scarred arm than dead with two perfect ones.

Why am I talking about all this? Because this story in my hometown paper really makes me angry. This young man had a disease that is rare, and that could have killed him. The doctors at OSU saved his life. Yes, his legs are amputated. Yes, his life is vastly different now. But he is alive. And for that, his family is suing 15 doctors and 2 hospitals? It infuriates me.

We could've sued, too, after my parents discovered what happened to my arm. And yes, for awhile, it was touch and go as to whether I'd still have it (thankfully I was in a blissful, epidural-induced euphoria and didn't know about that part until it was well over). In that great phrase, "S*&t happens." Yeah, it does. But I'm still alive. And so is he.

Parents: How To Be There

(Below, I use the word “child” instead of “patient”, since I’m talking mostly to parents here. But feel free to substitute your own word when reading.)
I like to compare myself to a cat. I don’t really like them (sorry, Di), but I compare myself to them because I match their longevity. By my count, I’m on life number seven. So I can have two more near-death experiences before The Last One.
As such, I tend to think about The End more than most people, especially most people my age. I’ve planned my funeral, for pete’s sake. I am fully aware than I am probably not going to die in my bed when I’m 85. I’m OK with that.
When people write about death and dying, I take an interest. Usually, it’s to see how I’d react in their situation. Unlike a lot of people, who are really just guessing, I’ve been there, and can imagine pretty clearly how I would (or how I have reacted).
The things I read are 99.9% by observers, not the patient. They’re written by nurses, doctors, caretakes, parents, what have you. Not the patient, because usually the patient’s dead. And normally I read them and then…move on.
But one blogger I read regularly recently wrote a column on death and dying and some of it touched nerves with me. So I thought that the patient’s point of view might be edifying one some points.

• When you are the patient, and you need support during a procedure, you should get it. Period. Now, I’m older, and I’m verbal. I can tell my parents to leave if I don’t want them watching something, or if I know it will upset them (like when I have to have IVs put in—they don’t want to watch me being poked fifty billion times. So I send them to the cafeteria, or whatever). But if I’m scared, (yes, I’m twenty-seven, and there are still scary procedures) I want one of them with me. Period. Full stop. Is this selfish? Maybe. But at the end of it, in the most primal way, I’m their kid, they’re my parents. As a child, I want my parent/s there. (If I had a spouse, maybe it would be him. Not sure.) I’ve always had at least one parent with me when I needed one, and sometimes I’ve had both. To not be with your child when s/he is in pain, and possibly could die, is beyond me. To me, being with your child trumps any feelings you might have about grossness. If your child is begging you to stay, you stay. Period. I can’t imagine asking my parents to stay, knowing I needed them to stay, and having them leave because they couldn’t watch the procedure being performed.
My dad has come from their house, in the middle of the night, to be with me when an emergency chest tube was put in. I was heavily sedated. I thought he was there, but I wasn’t really sure. He didn’t need to be there, and I’m pretty sure the procedure is gross to watch. But he was. My mom went with me when I needed to have fluid sucked out of my chest wall with a big needle. I’m sure that wasn’t high on her list of fun things to do with your child, but she did it. She’s changed the dressing on a second-degree burn, which, let me tell you, was not pretty. As a parent, you do plenty of things you really don’t want to do, but need done. The same applies here. Child asks, you stay.
• Really tough procedures, like trachs, g-tubes, ports, etc., that are permanent—yeah, these suck at the outset. They’re hard. In fact, trachs repell me so much that I’ve told my parents, repeatedly, that I do not ever want one unless there is absolutely noother way to keep me breathing. I’ve never had one, so my avoidance is purely based on gut-level revulsion. But if that’s what it takes to stay alive, well, we do it. I mean, that’s the name of the game—survival. I really, really, really did not want a port before I got one. I kicked and screamed (rhetorically). I didn’t want some permanent thing in me that everyone could see. (Now, almost no one can, unless they’re looking.) But it is a godsend. It makes my life 1,000 times easier, knowing that IV access isright there. Survival, in my book, is the key. Is it awful sometimes? Yes. But really, you do what you have to do. As a parent, you have to make this new apparatus as normal a part of the child’s life as possible. You cannot be repelled by it. You cannot say things like, “I hate this thing.” Your child can. But you are the child’s first societal application—if you are OK with it, that can go a long way in helping your child accept it. (When your child is older, then naturally you’re not going to be as protective.) You have to treat your child’s life as if it is normal. And it is normal—for your family. Failure to accept that makes life much harder than it has to be.
• As per the above: what about quality of life? Obviously, that’s important. But when it comes to living, then the cards, for me, tend to fall there. A good example is my hearing. It’s pretty important to me, as a singer. But before transplant, I was put on strong IV antibiotics that, we knew, damaged hearing. I knew that my hearing was already somewhat damaged when we started this drug course. I wasn’t happy about damaging it further. But we did the drugs anyway, because I would rather be alive and have the Bionic Ear than be dead with perfect hearing. Now, I wouldn’t want to be trached, permanently, if I couldn’t talk. That would really kill me, emotionally. My voice is a huge part of who I am. My entire quality of life would be shot if I was attached to a respirator all the time. But you know, I say that now. I don’t know if that’s permanent. I might have a husband and kids, and that would radically change my thinking. But right now, as a single twenty-seven year old, that’s what I feel. The thing here is that it’s subjective. My base instinct is always to preserve my life.
• At the end—the very end—I know what I want, and that is to have my death be in line with Church teachings. I’ve left it up to my parents, and of course they may consult the excellent priests we know for advice, should they require it. But this, too, goes back to point one—I trust my parents implicitly. I know they know me well enough to do right by me, if I can’t decide for myself. And for all parents/caregivers, this, I think, is where you ultimately want to be: in a place where your child trusts you to do what is right for her, and that she knows you will be there with her, no matter what option you’ve chosen. Parents, if your child is approaching this area, and they’re old enough (and able) to verbalize what they want, have a conversation about it. Your kid is probably scared enough, thinking about this, so be as supportive as you can, and try to discuss options, etc., with level heads. It’s hard. But it’s easier to talk about it before than to try to piece it together during or after.

The Simple Woman's Daybook--September 27, 2009

Outside My Window ...

It's dark now, but it was a beautiful fall day.

***

I am listening to...
L'Angelus, since it's Sunday.

***

To Live the Liturgy...

Rosary, Magnificat, Bible reading, classes

***
To Fit and Happy...

Gym tomorrow, ballet class on W.

***

I am thankful for...
Being healthy
***

I am pondering ...

How I can trick my body into letting me sleep tonight!
***

From the kitchen ...
This is what I made last night. And here's this week's schedule. 

I am wearing ...

A pink camisole, Pitt sweatpants.

***

I am creating ...
My memoir. It's going really well so far!

***
On my iPod...
(Isn't this the same as the above question? Oh well)

Stuff for my voice lessons--"Messiah", "Scarlet Pimpernel"

***

I am thinking...

that it was a good weekend.
***

Around the House

Not too much! The place is relatively clean!

.***

I am reading ...

"Home" by Marilyne Robinson

***

I am hoping and praying ...
For friends I know with cancer; for a good appointment tomorrow, and good oral surgery this week. 

***

On Keeping Home ...

these candles look awesome. (keeping this link because they are awesome)

And MORE candles: these are what I'm burning right now.

*yeah, I really like candles*

***
One of my favorite things ...

This jam. 

***

A Few Plans For The Rest Of The Week:

Monday: Gym

Tuesday: House!

Wednesday: Ballet, Glee

Thursday: Voice, Bones, going to parents'

Friday: Oral surgery--oh yay. 

***

If you like reading my daybook, you can find many more over at Peggy's!

SOHC 17: 10 ways we beat Europe and Canada

h/t Corner:

1. Americans have better survival rates than Europeans for common cancers. Breast cancer mortality is 52 percent higher in Germany than in the United States and 88 percent higher in the United Kingdom. Prostate cancer mortality is 604 percent higher in the United Kingdom and 457 percent higher in Norway. The mortality rate for colorectal cancer among British men and women is about 40 percent higher.

2. Americans have lower cancer mortality rates than Canadians. Breast cancer mortality in Canada is 9 percent higher than in the United States, prostate cancer is 184 percent higher, and colon cancer among men is about 10 percent higher.

3. Americans have better access to treatment for chronic diseases than patients in other developed countries. Some 56 percent of Americans who could benefit from statin drugs, which reduce cholesterol and protect against heart disease, are taking them. By comparison, of those patients who could benefit from these drugs, only 36 percent of the Dutch, 29 percent of the Swiss, 26 percent of Germans, 23 percent of Britons, and 17 percent of Italians receive them.

4. Americans have better access to preventive cancer screening than Canadians. Take the proportion of the appropriate-age population groups who have received recommended tests for breast, cervical, prostate, and colon cancer:

• Nine out of ten middle-aged American women (89 percent) have had a mammogram, compared to fewer than three-fourths of Canadians (72 percent).


• Nearly all American women (96 percent) have had a Pap smear, compared to fewer than 90 percent of Canadians.


• More than half of American men (54 percent) have had a prostatespecific antigen (PSA) test, compared to fewer than one in six Canadians (16 percent).


• Nearly one-third of Americans (30 percent) have had a colonoscopy, compared with fewer than one in twenty Canadians (5 percent).

5. Lower-income Americans are in better health than comparable Canadians. Twice as many American seniors with below-median incomes self-report “excellent” health (11.7 percent) compared to Canadian seniors (5.8 percent). Conversely, white, young Canadian adults with below-median incomes are 20 percent more likely than lower-income Americans to describe their health as “fair or poor.”

6. Americans spend less time waiting for care than patients in Canada and the United Kingdom. Canadian and British patients wait about twice as long—sometimes more than a year—to see a specialist, have elective surgery such as hip replacements, or get radiation treatment for cancer. All told, 827,429 people are waiting for some type of procedure in Canada. In Britain, nearly 1.8 million people are waiting for a hospital admission or outpatient treatment.

7. People in countries with more government control of health care are highly dissatisfied and believe reform is needed. More than 70 percent of German, Canadian, Australian, New Zealand, and British adults say their health system needs either “fundamental change” or “complete rebuilding.”

8. Americans are more satisfied with the care they receive than Canadians. When asked about their own health care instead of the “health care system,” more than half of Americans (51.3 percent) are very satisfied with their health care services, compared with only 41.5 percent of Canadians; a lower proportion of Americans are dissatisfied (6.8 percent) than Canadians (8.5 percent).

9. Americans have better access to important new technologies such as medical imaging than do patients in Canada or Britain. An overwhelming majority of leading American physicians identify computerized tomography (CT) and magnetic resonance imaging (MRI) as the most important medical innovations for improving patient care during the previous decade—even as economists and policy makers unfamiliar with actual medical practice decry these techniques as wasteful. The United States has thirty-four CT scanners per million Americans, compared to twelve in Canada and eight in Britain. The United States has almost twenty-seven MRI machines per million people compared to about six per million in Canada and Britain.

10. Americans are responsible for the vast majority of all health care innovations. The top five U.S. hospitals conduct more clinical trials than all the hospitals in any other developed country. Since the mid- 1970s, the Nobel Prize in medicine or physiology has gone to U.S. residents more often than recipients from all other countries combined. In only five of the past thirty-four years did a scientist living in the United States not win or share in the prize. Most important recent medical innovations were developed in the United States.

Despite serious challenges, such as escalating costs and care for the uninsured, the U.S. health care system compares favorably to those in other developed countries.

The link is here.

SOHC 16: Mitt on MA's program

Mr. President, What's the Rush? (USA Today op-ed by Mitt Romney)

Sounds like he's setting up to be our standard bearer, no?

:)

SOHC 15: End of Life Care

Charles Krauthammer, during Special Report: (emphases mine)

Byron talked about Obama's answer about the 100-year-old woman who... had the pacemaker, and he said, well, perhaps she should have had a painkiller.

Well, that not only is chilling, it is a revelation of abysmal ignorance on the part of the president. You don't treat an arrhythmia with a painkiller.

This is a guy who wants to run one-sixth of our economy in health care, and he doesn't know the most elementary things about it.

But on the larger issue here having to deal with end-of-life care, I looked at the language [in the House bill]. There is no requirement that you be counseled, because it would be inherently coercive. If you're dying and a government official shows up and says I want to discuss options including your death, that obviously is going to be kind of a coercion.

But the idea that it is important to do it [end-of-life counseling] years in advance is nonsense. We heard Senator Grassley say this stuff ought to be decided when you're 50 and not when you're 80. What doctor, when he has an 80-year-old with pneumonia, will look at a document signed 30 years earlier and say he [the patient] decided he didn't want to have extra treatment, so I'll pull the plug?

The idea of advanced directives (as it is called in the [medical] lingo) or living wills are determinative, is absolutely false. It almost never applies. It only [applies] if you are in a coma or demented, and even in those cases, it's the wishes of the family which almost always override everything in writing.

SOHC 14: Infant mortality

When talking about the need to reform our health care system, people almost always bring up infant mortality rates in the U.S. But do we think about why the infant mortality rate may be higher here?

The main reason for the high rate is preterm delivery, and there was a 10 percent increase in such births from 2000 to 2006, according to recent figures from the Centers for Disease Control and Prevention. (In 2007, according to preliminary data just published by the C.D.C. , that rate declined by 1 percent, mainly among late preterm infants.)

The article this is pulled from can be found here. (From The New York Times)

How much do I love these guys?

Yet another reason to love Pittsburgh--CF fundraising! Woot!

Health care stuff

Read this

And the check out the 'health care' and 'CF' links on the sidebar, for more.

Health care, etc.

First, a "Duh" link: certain drugs can cause hearing loss!

Yeah, could've found this out by talking to my ENT. Sheesh.

And two SOHC links:

Congratulations, it's a ...cross-border incident! [Mark Steyn]

Somewhere in America Alone, I cite an example of the logical reductio of socialized health care: "the ten-month wait for the maternity ward". I've been adding to the file ever since. Here's the latest entry, from Hamilton, Ontario:

Hamilton's neonatal intensive care unit (NICU) was full when Ava Isabella Stinson was born 14 weeks premature at St. Joseph's Hospital Thursday at 12:24 p.m.

A provincewide search for an open NICU bed came up empty, leaving no choice but to send the two-pound, four-ounce preemie to Buffalo that evening.

Well, it would be unreasonable to expect Hamilton, a city of half-a-million people just down the road from Canada's largest city (Greater Toronto Area, five-and-a-half million) in the most densely populated part of Canada's most populous province (Ontario, 13 million people) to be able to offer the same level of neonatal care as Buffalo, a post-industrial ruin in steep population decline for half-a-century.

But wait! The fun and games are only just beginning. When a decrepit and incompetent Canadian health bureaucracy meets a boneheaded and inhuman American border "security" bureaucracy, you'll be getting a birth experience you'll treasure forever:

Her parents, Natalie Paquette and Richard Stinson, couldn't follow their baby because as of June 1, a passport is required to cross the border into the United States. They're having to approve medical procedures over the phone and are terrified something will happen to their baby before they get there.

Once Buffalo enjoys the benefits of Hamilton-level health care, I wonder where Ontario will be shipping the preemies to. Costa Rica?

And two:

e my post below on the Hamilton (Ontario) newborn currently in a Buffalo (New York) hospital, a reader from Pennsburg, Pa writes:

ROFLMAO!!
You guys are hysterical....bitching about Hamilton and Buffalo.
I've got a friend who's a cop near Pittsburgh. He hasn't seen a doctor in 30 years. The last physical he got was from me when I was in nursing school.

How's THAT for health care? I bet your ass you don't put THAT in your little NRO rag.

Hmm. I'd be interested to know which police department he works for. Presumably not Pittsburgh, where the Fraternal Order of Police was founded. But even small municipal departments offer health benefits such that, if an officer goes three decades without seeing a doctor, it's his choice.

Meanwhile, just to keep you ROFLYAO a bit longer, here's a story from one of Quebec's most prestigious hospitals:

A woman admitted to Montreal's Royal Victoria Hospital for an induced birth was forced into a do-it-yourself delivery last month, with only her non-medically trained common-law partner to assist...

At about 5 a.m. on May 13, medical help failed to appear even after Karine Lachapelle's water broke.

Despite attempts to summon help by partner Mark Schouls, who was pushing a nurse-alert button with increasing frequency as Lachapelle's contractions became more intense, the two delivered their new son, Kristophe, entirely on their own.

Lachapelle pushed the child out past his shoulders and face down, allowing Schouls to get a grip and pull the newborn the rest of the way out, he recounted.

There were no complications, and Kristophe was crying loudly within seconds...

Nobody on hospital staff will face disciplinary action, Kalina said.

"Both nurses were hard at work" in the pre-natal waiting area where Lachapelle had been placed. She was sharing a room with two other women with at-risk pregnancies.

"Both" nurses? Don't worry, that's for the Maternity wing, not the entire hospital.

CF folks in Ireland, part II

More on the wonders of Universal Health Care!
A salient point: (emphases mine)

Cystic fibrosis sufferers again left in the queue
Sunday, April 05, 2009 By Aileen O’Meara
Last week began with another row in the health services which had a familiar theme: should the private sector provide public health services?

This row centred on the issue of long-awaited and necessary facilities for people with cystic fibrosis (CF). The cash-strapped Health Service Executive (HSE) confirmed that it would not have the resources until 2011 ‘‘at the earliest’’ to build the promised special unit for CF sufferers at St Vincent’s Hospital in Dublin.

This is a year later than promised after an intense media campaign in January last year, when CF sufferers - led by Orla Tinsley - highlighted the scandalous conditions for cystic fibrosis sufferers in hospitals which lack isolated single rooms to prevent suffers picking up infections. (you must, must, must have single rooms for CF suffers. Without it, you are just compounding the problem. CF patients can spread a bacteria called b.cepacia, that is highly dangerous and only dangerous to the CF population. That's why CF kids can't play together anymore, or have camps, without wearing masks and being in a large space. The fact that they do not have this most basic resource is absolutely appalling.) That campaign led to the promise of a 30-bed unit in a new 120-bed hospital in the grounds of St Vincent’s. (Here at Children's, we have entire CF floors. And not only that, the new hospital will have only private rooms.)

Replying to complaints, health minister Mary Harney told journalists last week that the state would have to look at the possibility of private sector investment to build the unit.

Her pragmatic response was criticised from the Labour Party and Sinn Féin, in particular, on the funding issue. ‘‘The public health service is not the responsibility of the private sector. If minister Harney insists on peddling this defunct PD ideology at the expense of people’s lives, then she should go,” said Jan O’Sullivan of Labour. Wait, EXCUSE ME? You are the ones who are pushing ideology at the expense of lives! Sheesh! CF patients need private rooms. it's not a vanity thing. It's necessary.

Sinn Féin’s Caoimhghín O’ Caoláin said the minister’s suggestion ‘‘added insult to injury’’, adding that this was ‘‘a recipe for further delay’’, and was the minister’s knee-jerk response to every problem in the health service.

The row about the CF unit in St Vincent’s encapsulates many of the elements of the dilemma facing the government, the Department of Health and the HSE, with the abrupt end to the economic boom.

OK so here's the deal--Children's can expand to meet its needs, like, oh, setting up a lung transplant program-- because the private sector can donate funding. It's now called "Nationwide Children's Hospital" because the insurance giant donated millions of dollars to the hospital. Every year, Children's has a telethon to raise money for the hospital (I was a part of it in 2006). They take donations of money, toys, books, etc. for patients and their families. Local companies donate hundreds of thousands--sometimes even millions of dollars--to the hospital. This enable them to provide top-notch care and save thousands of lives.

In the hallway linking the outpatient care unit and the education building, there are many plaques listing the names of donors, in amounts ranging from $500,000+ to $1,000. Some of these are families, individuals, small businesses, and huge corporations.

Yes, the hospital also gets money from the state, and just received federal stimulus money. But the hospital would, in no way, shape or form, be able to provide the care it does WITHOUT private donors.

Lovely.

Masters of Dark Arts cast a bitter spell

We can fix this country if we insist on fairness, logic and an equality of opportunity for all, writes Gene Kerrigan

By Gene Kerrigan

Sunday April 05 2009

The market is back for what used to be called "white mince". It was a staple food for a lot of people in the bad old days of the 1980s.

It's not really white, more like pale pink. The mince on the top shelf of my local supermarket is the "healthy option", guaranteed not more than five per cent fat. On the bottom shelf, the low-priced "white mince" is guaranteed not more than 28 per cent fat.

For those who can't afford even that, there are the food queues. All across the country, people struggle desperately to hang onto their jobs, their homes, their lives. Next Tuesday, having already decided to deprive Cystic Fibrosis patients of life-prolonging treatment units, the Government will announce new ways to help us "share the pain".

Meanwhile, one banker turned down a top job because it pays a mere €360,000. He knows he won't go short -- there are lots of high-paying positions at certain levels. And RTE announces that bank bosses want to "renegotiate" the cap on salaries -- they're upset that the top money is €690,000, the poor darlings.

There's a pretence that certain people are worth big money, because they alone are Masters of the Dark Arts of Finance -- they include bankers, brokers, consultants and economists. It doesn't matter that bankers and their wealthy clients and their favourite politicians engineered the meltdown of the economy. Despite their record, they remain Masters of the Dark Arts. In devising strategies for fixing the economy, the Government listens to them.

How good are they? The Master we've picked is not a banker, but one of those celebrity economists who never stops publicly demanding this or that measure. Jim Power, Chief Economist with Friends First. Let's look at his record.

Jim was once worried by the credit bubble. In 2004, he described bank practices as "nutty". He warned, "When things go wrong they go very wrong". In March 2006, he warned that "a significant correction to house prices would . . . undermine the overall economy". Which is what happened.

"An economy cannot grow on the basis of the public sector and the housing market indefinitely," Jim said.

He called on policy makers to "focus on nurturing an indigenous and sustainable economic base".

This was sensible. Jim is a smart guy.

By February 2007 he was more optimistic. "Nothing in the overall data" suggested a hard landing. At a round-table discussion he suggested that the Regulator might take "a more flexible approach to stress testing" for loans. Odd advice, given that the regulator was not so much flexible as limp as a wet noodle.

The following month Jim was sure there was no bubble. "The market looks set to remain solidly based. Beyond 2007, house price inflation should settle down to levels broadly consistent with general inflation out to the end of the decade."

A "soft landing" was in sight. "The fundamental demand in the marketplace is still strong and is not about to disappear,'' he said in April 2007, as the fundamental demand was about to disappear.

It was about the time of Richard Curran's TV programme warning of economic dangers. "There is currently an inordinate amount of negativity permeating Irish economic debate," Master Jim told the Heineken Ireland Open Forum, in Cork.

A report said he warned against the "merchants of doom" who were risking the country's future prospects. Merchants of doom, huh? Remember that phrase.

In January 2008, "After more than a decade of uninterrupted growth, the Irish housing market finally came a cropper in 2007". Another four months and Jim mused that, "2008 is certainly turning out to be a challenging year".

Back in June 2007 he knew that a slowdown "should not be of sufficient scale to seriously undermine the overall economy". By November 2008: "I reckon the majority of first-time buyers who bought into the market over the last three years are in negative equity". (These, of course, would be the people who ignored the "merchants of doom".)

By January 2009 Master Jim was denouncing those who demanded we all "talk up the economy". He complained: "One is now fearful about saying anything negative in case one gets vilified or accused of being a . . ."

And here the average Soapbox reader surely knows what's coming. ". . . merchant of doom". Master Jim, in short, was worried about being denounced by . . . well, presumably by Master Jim.

The government, Jim complained, "only took advice from people who told them what they wanted to hear and they never listened to anyone who was criticising them".

To which we can only say, Duh.

We must emphasise that there's nothing spectacularly unique about Master Jim. He is representative of that whole class of Masters of the Dark Arts who spent most of the past decade talking through their arses.

In fact, Master Jim at least spotted the dangers, around 2004 -- which many of them never did.

Today, it's the Masters of the Dark Arts who are directing the debate on the emergency Budget, on the solution to the banking crisis, and on how we should "share the pain".

Like the rest, Master Jim is all for "wage restraint, major cuts in public spending . . . a proper financial regulatory framework". (One, perhaps, that's not so "flexible".)

Last week the Irish Times reported that he wants the Government to consider a cut in the minimum wage, because it's a "major source of lack of competitiveness".

This is the same Master of the Dark Arts who last July rejected a cut in the minimum wage, as scraping the bottom of the barrel.

This country is broken. If and when and how it gets fixed will determine how we live and how many are forced to leave the country. It will determine how many of us will die prematurely on hospital waiting lists.

The hills are alive with media airheads insisting that we not "point the finger" or "play the blame game", that we must listen to the Masters of the Dark Arts as they prescribe the amount of pain we all must bear.

The vast majority of us didn't gamble and didn't party or borrow more than we could afford. The vast majority of us worked and paid our taxes conscientiously.

Now, the Government has drawn up measures that will shred our lives -- this in a country where there are Masters of the Dark Arts who turn down jobs because €360,000 isn't enough, where €700,000 is deprivation.

The Government is struggling. They see their job not as looking at the broken pieces and putting them together in the most logical way. For instance, nationalise the major banks, throw out the clowns who run them, let outfits like Anglo die.

Instead, they seek to restore things exactly as they were -- to maintain the old relationships, the status of the Great Ones. And, above all, to maintain the ratio of earnings between the Great Ones and the rest of us. To do otherwise is to breach a sacred tenet of the Dark Arts.

We can fix this country, if we insist on equality of opportunity, equality of democracy, if we insist on fairness and logic. If we stop genuflecting to the semi-religious economic prescriptions put out by people whose record doesn't -- to say the least -- inspire confidence.

And, the next media airhead who tells me that we must all "share the pain", that some must go jobless and hungry while others continue their obscene spending, is going to get their face rubbed in a plate of white mince.

- Gene Kerrigan

So, yeah, all our health care problems will be solved if--when!--we go to government health care.

Right.

You want difficulty? I'll give you difficulty!

Treating patients with multiple conditions proves difficult

A Health Care Rant

OK real quick--

in a lot of papers yesterday, there was a story about how millions of people can't afford their prescription drugs. OK. This isn't really new. 

Some of these stories allowed comments beneath it. This is where people continue to amaze me. They talk about the evil corporate drug companies who are just out for profit, and it's all their fault!

As Mitt Romney said back in February '08, Drug Companies Are Not Evil. 

Do you know how much it costs to develop a new drug? How many trials have to be done? How many scientists you have to pay, lab time has to be bought, oh, and ingredients? How much trial and error before you get a drug that actually works? 

This costs money. I'm sorry. And yes, drugs like mine, which fewer people take, costs more, because not that many people need tac or imuran to stay alive. 

Look--the U.S. develops a TON of new drugs. This costs money. So you can pick--have the drugs available, or don't have them available, which means certain things, like transplants, can't happen, because we can't solve the rejection component. 

It's expensive to stay alive. I know. Should it be this expensive? Discuss. But please do not just blame it on the drug companies. 

Whoa buddy!!!

Look, I like John McCain.
But DO NOT EVER, EVER, EVER put "cosmetic surgery" and "transplants" in the same sentence!!!!

ARGH!!!

One is...um...optional.
One is...NOT.

My skin graft on my right arm may have counted as "cosmetic", but I doubt it, since, you know, without it the risk of infection was sky high.

face lifts? Liposuction? That is SO not the same.

Why I Am A Conservative

to be updated later!

Connie Schultz in the Cleveland Plain Dealer wrote a column describing the reasons why she's a liberal. I'd like to do the same, except for my political beliefs. 

The first, and the biggest:

• I am a conservative, because I believe all of us have a right to life.  
  

I was born with CF. With genetic testing the way it is now, some mothers would have aborted me. Republicans like Henry Hyde (RIP) kept that from happening, so more of us are alive. 

More to come, so watch this post!

The costs of drugs

A lot of people complain about how much drugs cost in America--$400 a year, $4,000 a month, drugs that can cost $10,000 a year (like some immunosuppresants).

Do you know how much it costs to develop a drug, on average?

$802 million dollars.

Over 10-15 years.

That's a lot of money, and the drug companies pay for failures, over and over. Drugs just don't magically appear. They need years, even decades, of clinical research and testing trials. Only a scanty few make it through the rigorous FDA approval process.

How many scripts would it take to pay back the R&D investment? A whole lot. More than some drugs will ever see.

So the next time you complain about high drug prices, think about this--the reason we have the drugs at all is because some of that money goes back into R&D, to make new drugs to save lives.