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I’m 31 and I was recently pondering an area of my life that is semi-lacking and am just wondering how other people out there feel about it… I was so lucky to have found love a few years back when that ended I found myself wondering if it had to do with my CF… I had walked in one day and Justin was sitting at our desk, as I got closer I noticed he had pulled up a website on CF and all the stats… He turned around and had tears streaming out of his eyes… I explained to him that I was healthy and that no one is guaranteed tomorrow… I told him that my CF was not going to kill me and to be honest with his past-time hobbies (Motocross, ultimate fighting, quadding) that I should be more worried than he should… He assured me that it wasn’t a big deal and that he loved me and my CF was not going to play a part in it… As time went on and we found ourselves engaged and talking about children… He was tested to see if he carried any of the CF genes and it came back he didn’t… We were so ecstatic about the news… A few months later we were over with no real reason why… He would swear it had nothing to do with my CF, but it is the only logical reason I can explain how a relationship like ours would just be over…
This was not the first time something like that had happened, it was just different because it appeared that my CF wasn’t going to play a part in our relationship… A few times in the past I have had relationships that have seemed to have ended because of the CF and the fear that comes along with being in love with someone with a possible life threatening disease… I think that men with CF may have an easier time finding a gf/wife that is OK with it because women have the need to take care of someone, so it works out better in that case, I think… That is just my opinion though and I am SO curious what you think about the subject… Has anyone else out there found that once their CF is mentioned, that the relationship changes…
This weekend Olympia suffered a great tragedy when it lost a good man, Ryan Dahl… Though I didn’t know Ryan as well as some of you, I still definitely considered him my friend… and will miss his presence at the Srnka household, Mojito Bay, El Sarape and the occasional sighting at the Mall… Through this tragedy it has got me really thinking about “Life” and is such a reminder of the small things in life…
Tomorrow becomes Today, Today becomes Yesterday… and Yesterday is too late… So as you read this, think about those that you love, those that you miss, those who you have been meaning to call, those who you have been feuding with, those, who if tomorrow never came you wish you “would have…” End the feuds… make the calls… let them know you love them… It is amazing to me how beautiful life is and how precious our time on this earth actually is… People get irritated with their friends and sometimes say things that they necessarily wouldn’t say “to their face”… Keep this in mind when you are speaking of another, especially a friend… because if by chance there were no tomorrow, you never get the chance to change it… I know there is not one person in my group of friends that wouldn’t give anything right now to hear Ryan’s loud carrying voice when they came through the door, or to have him call them all the time to hang out… The small things in life that may annoy us at some points are the things that we miss the most when they are gone…
So go make those calls, leave those messages… and let people know that you are thinking about them and that you love them…
Ryan~ You will be so missed, you have no idea… Your friends already miss you terribly and even though they probably never told you, they sure love you… and there is nothing they wouldn’t give to have you back… You had a smile that could light up a room and your presence was always upbeat and full of energy… and that will be missed so much… I know you and your sister are in Heaven and I am glad that you have each other… Though I didn’t know her, I got to hear stories about the love you two shared… and how much you took care of each other… You take care and watch over all of us and keep us safe… Miss you buddy…
Little Reece Thompson is a sweet angel and has probably indured more in his 5 years than most will in a lifetime… He has been hospitalized numerous times in the last couple of years and once again is on his way to UNC, Chapel Hill. His doctor has done bronchs, CT scans & a perfusion scans to find out he has NO function in the left lung. She thinks it staying in there will just make Reece sicker & seed infection into the right lung. (which has a function of 64%) They have decided that removing his left lung is the best option. Thats why they are going to UNC, to give the doctors a chance to meet Reece andexamine his scans and then meet him for themselves. They will do a bronch at that time and if they think they need to, they will remove his little lung right then & there.
The Thompson Family has turned to Breathe 4 Tomorrrow needing alittle help with some of the travel fees. They will be 4 hours from home and have no set schedule when they will be returning. The expenses between gas, food, lodging and other life expenses add up and we would love help their family. We are still in the beginning stages and unfortunately don’t have the funds right now. So we have put together a little fundraiser to help the family. Although we have not received our 501(c) 3, so your donations are not tax deducable, any help will be greatly appreciated by the family. Please visit our website at www.breathe4tomorrow.org and click on the “Donate” button to leave a donation, if you don’t have a paypal account, you can send checks or go into any Bank of Americaand donate that way as well. 100% of all donations received between now and January 29th will go directly to the Thompson family.
Thank you so much for your time~
Sarah
I came across this today on myspace and just want to share it with everyone… It is amazing to me and makes me SO ANGRY, but what can you do? Write your local congress person. Make sure you are reading what the candidate you are voting for stands for and believes… It is so sad to me that people make money off of the sick and this is just another article that proves that… PLEASE LEAVE A COMMENT!! Let’s make a difference… this is an example of how our foundation will be helping people… we would like to be able to pick up where insurance leaves off, though, let’s face it… the real problem, the drug manufacturing companies combined with the insurance companies… dangerous combination…
Thank you once again for your time
Sarah Jean
Body: This was in the NY times about CF & insurance issues. Please, read! This WILL take your breathe away. By: Steve Lopez, NY TimesI was on my way to the Encino home of a 10-year-old boy named Preston, but I could have gone in any direction for the same kind of story.Ever since I wrote a few years ago about a San Gabriel Valley woman who had breast cancer and couldn’t get health insurance (her family resorted to a yard sale to pay her medical bills), I’ve gotten a steady trickle of similar tales. Last week, I had one involving an oncologist whose cancer treatment is not being covered because his health insurance company says his illness is a pre-existing condition.Preston doesn’t have cancer, but he was born with cystic fibrosis. And the cost of the medicine that keeps him breathing just shot up like a rocket, thanks to an insurance company decision I’m still trying to decipher.
I’ll get to the details in a moment, but first, some political context.
The last place to expect a workable healthcare reform proposal is in a presidential campaign, and this one will be no exception in the end. There’s way too much money riding on keeping things as they are.
Here in California, Gov. Arnold Schwarzenegger and Assembly Speaker Fabian Nuñez would have you believe they stepped into the leadership void with last month’s health insurance-for-all proposal.
But all they’ve done is come up with a shaky idea to require nearly everyone to buy medical insurance from the same companies we’ve all become so fed up with. Employers and hospitals would have to pick up part of the tab, and there might be a new tax on cigarettes to provide some support. But even if the vague and dubious funding proposals come to pass, there would be little or nothing in the way of additional controls on insurance companies in terms of what they cover or what they charge.
State Sen. Sheila Kuehl, one of the legislature’s strongest advocates of healthcare reform, eviscerated the Schwarzenegger-Nuñez package in a Dec. 17 analysis you can read on her website ( www.dist23.casen.). She said if it came to pass, and insurance companies were forced to take on everyone who is now uninsured, premiums for the rest of us would balloon.
“And it seems to me that they will probably have to resort to more and more denials of care,” said Kuehl. Her single-payer proposal would take insurance companies and their profit machines out of the equation, but it has languished for all the predictable reasons, including the huge influence of the insurance lobby.
I began telling Kuehl about Preston and his family’s issues with their insurer, but halfway through I stopped myself, figuring she’s heard hundreds of similar stories.
“No,” she said. “It’s in the thousands.”
Preston, a cute, curly-haired lad with bright blue eyes, leads a relatively normal life, albeit with strict dietary restrictions and 20 pills a day. He showed me how he straps on a percussive vest twice daily. The vest is attached to a pump, and forced air makes it vibrate roughly, loosening the congestion in his lungs. That and an inhaled medication called Pulmozyme keep him breathing.
But last month, the cost of that Pulmozyme blasted through the ozone.
It had been running them $30 a month.
Suddenly it was $784.
“They never called,” Marla, who takes care of Preston and 5-year-old Tyler, said of Blue Cross.
“They never talked to our doctor,” said Jeff, a self-employed financial investor.
With no warning, the insurance company decided to pick up less of the cost, leaving Preston’s family to come up with an extra $9,000 a year for his medicine.
If a cheaper generic were available, they’d gladly switch. But they said there is no substitute for Pulmozyme, an enzyme-based medication that controls mucus secretions and was developed specifically for cystic fibrosis patients. Their doctor confirmed this.
“It was a big surprise,” Eithne Maclaughlin, of Childrens Hospital Los Angeles, said of the sudden price inflation. “And it’s very upsetting.”
Maclaughlin said several of her patients had been hit with the same spike in their co-pay cost.
“They’ve got you by the neck,” she said of any insurance company that jacks up the cost of breathing freely. “It’s all about money, let’s face it.”
At the Cystic Fibrosis Foundation, Laurie Fink said the trend was not limited to Pulmozyme, or to Blue Cross. A poll by the foundation found that 21% of people with cystic fibrosis have skipped doses of medicine to keep costs down and 13% have delayed seeking treatment for the same reason.
In Preston’s case, Maclaughlin cut his dosage back to see if he did OK on that regimen, which would save a big chunk of money for his parents.
Preston’s dad was not flatly contemptuous of Blue Cross, which he said has been a life saver for the family. (Not that their premiums are cheap, at $1,200 a month, even with big deductibles.) He also granted that Pulmozyme is extremely expensive — the real cost of the medication is about $1,500 monthly in his son’s case, and Blue Cross had been picking up the bulk of the bill.
Hoping for an explanation, and reconsideration, Preston’s parents filed a grievance. Blue Cross quickly rejected it.
“Pulmozyme is no longer a Formulary medication,” said the virtually incomprehensible letter, which gallingly suggested the increase was part of Blue Cross’ commitment to providing its customers “the best possible care and access to medications.”
Preston’s parents are appealing the rejection to the state Department of Managed Health Care, which said it would have a ruling this month.
As I understand it, formulary drugs are essentially drugs a health plan recommends as effective yet less expensive alternatives to non-formulary drugs. Think generic versus non-generic. But in the case of Pulmozyme, a cheaper imitation does not exist.
When I asked Blue Cross for an explanation, I got this by e-mail:
“As with other health plans, the decision to add or remove a drug from the formulary is done through a review committee made up of medical experts. At Blue Cross, this group is the Pharmacy and Therapeutic committee. Pulmozyme is currently considered a specialty medication and is covered for our members, but at a higher member share of the cost than other medications. The goal of these ongoing reviews is to assure access to all necessary drugs while also keeping costs as affordable as possible for all of our members.”
Takes your breath away, doesn’t it?
Here at B4T, we are trying to promote a positive attitude amongst those of us with Cystic Fibrosis. We really want to make a place that people with a positive attitude about their CF can come and share about their outlooks. Through this we have had the opportunity to meet some really amazing people. Two of them have created a website and I want to share it with any and everybody. So please go check them out and let me know what you think of their website:
Thank you for stopping by!!!
I’m sitting here tonight and I am trying to ponder the idea of how our government makes money off sick children. It makes me absolutely heartbroken. I want to know what our government is doing to help cure our disease. I feel like such a conspiracy theorist when I think the way I am thinking tonight. I feel like they make so much money off of us being sick, so why would they cure CF? I hope with all my heart that that is not the reality of it, but I just want to know if anyone else out there feels like that? Nothing surprises me from our government anymore. It seems like we have all of these medications to subside the problems, I feel like it is time to find the cure…
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