Thursday, January 24, 2013

Have You Ever Wondered...

It's that time of year again - Great Strides Fundraising time. I have no gauge for how many of our friends and family read this, or how many perfect strangers stop by to take a look at what I have to say. I do know that over the past 3 years, we have had over 47,000 people from many different countries checking in to see what we have going on. Imagine how much awareness we could create if everyone just shared this with one person!

Every year, I write these blog posts and create these videos to show people what it is like to have Cystic Fibrosis. Every year, I find some new people who care, who want to fight with us, walk along side with us, raise money for us. I need to find more. Cystic Fibrosis is so close to being cured. In 2012, the first drug to ever target the basic defect of a genetic disease was created and treats 4% of the CF population. That's close to 3,000 people who had CF and are now living normal healthy lives. And what about the other 96% of us? Our drug is on the horizon. Many doctors and researchers and scientists are working on our drug right now, and with enough financial support, that drug could be available to us within the next 5 years. We need your help to support the research that is going on right now. You can make a difference for us. You can be a part of saving Drew's life.

Please take a moment to watch the video that we put together. Please consider sharing it. Please consider walking with us and fundraising with us, whoever you are, wherever you are. We cannot do this alone and from the bottom of our hearts appreciate any help that you are able to provide.

Saturday, January 19, 2013

One crazy busy week...but it was a good busy

This has been a busy busy week!  On Monday night, co-founder of Karan Singh called me to talk more about the opportunity for us to work together. I was so thrilled to have the opportunity to talk with him to personally and express my interest in his company and how I think can grow, both within the IBD community as well as in other chronic conditions, specifically Cystic Fibrosis. The conversation went really well (in my humble opinion) and I followed up later in the week with an email including some of my ideas around a strategy for growing the company. Hopefully I will hear from them soon and they will want me to be a part of their team as badly as I want to be.

On Tuesday, I had a meeting at Children's with the team working to bring the C3N to CF. We are in the final weeks of preparing for our visit with the VP of Clinical Affairs from the CF Foundation, Bruce Marshall, and we are ironing out all the kinks and making sure that we have a solid presentation. I'm going to start the meeting (yay!) with a personal story or testament of sorts as to how we, the patient, could benefit from the C3N for CF and how we see it improving both care and outcomes. My talk includes, as I see that as equally beneficial to the CF community, and more and more of the people I meet with are starting to agree with me!

I was invited to speak at a corporate recruitment event that the Cystic Fibrosis Foundation was having on Wednesday over lunch. It went so, so well. I was able to talk with the VP of the Bank of Kentucky and the wife of the new president of NKU and several other folks in positions of power and influence. We had a great conversation and I left with some new connections in the community and some new support for the Foundation.

Thursday didn't go as expected, but it went well anyway. At the event on Tuesday, one of the girls who works at the CF Foundation locally told me that she'd been contacted by the father of a girl with CF who has a connection to Rep. Brad Wenstrup. It wasn't entirely clear who we were meeting with, but I got my advocacy materials together and met for lunch with the CF dad and a colleague of his who has a number of connections politically. He was able to provide quite a few connections for us and some tips on getting into meetings with senators and representatives. It turned out to be a great meeting, even though we had less than 24 hours to plan for it! From there I went back to Children's for a meeting with a team that I'm working with to create a Facebook page for CF at Cincy Children's. We are doing it with the intention of collecting useful and shareable data and using it to enhance other different projects that are going on. We are hoping to get many in our clinic and the adult clinic at UC to join the page and contribute to different discussions that we initiate. It will be open to anyone, so once its up I'll spread the word! I got to spend some time in the NICU Thursday evening, and then attended a Tupperware event. I'm about to start my annual fundraising campaign again and Tupperware will be a part of it (try to contain your excitement).

Friday was our monthly CF Parent Involvement in Quality Improvement meeting at CCHMC. We are still working on getting patients more involved in the pre-visit planning. It's coming along nicely, and I hope that as we get more integrated with the C3N project, we can really benefit from the collaboration of patients and physicians.

One of the highlights of my week now is the twins dance class on Friday evenings. Usually by 5pm Friday I am ready to check out. I was nervous about the time slot, because everyone is cranky then, but to see my babies (and the one other little girl in their class) concentrating and working so hard and at the same time having so much fun, it just warms my heart and makes me smile. It is the perfect way to end my week.

Drew has been coughing a little bit more than normal for about a week now. It's not enough to be terribly concerning, but on Friday I finally mentioned it to his doc and she gave me a throat swab and some orders to take a culture. I asked if I could do it from home because I'm terrified of taking him into the hospital during the germiest season of all time. I did the culture and dropped it off on Friday night so we should know something by the middle of next week. Hopefully its nothing, but if it is, at least we will know and can get him on something. He's really been pretty healthy (knock on wood) the past couple of months. I hope that it continues!!

Next week is a bit slower. We don't have any real plans and I think it will be nice to not have to worry about a schedule, outside of school of course. I'm getting my back fixed on Thursday and that means that after they jam 4 giant needles into my spine, I will get to lay in bed all day. I am looking forward to some pain relief and a day off! I've been doing this for almost 10 years now, just about every 6 months. The injections really do the trick and last a nice long time, and any surgical alternatives are risky and not guaranteed to fix my problem. So the injections and a day of relaxation continue.

February 1st is the big meeting with Bruce Marshall and I'm excited! I'm also psyched for the March on the Hill and the Volunteer Leadership Conference in DC at the beginning of March. There are so many good things happening in CF right now and I'm so happy to be a part of it!

Wednesday, January 9, 2013

We're Making Great Strides in Cystic Fibrosis

To Our Family, Friends, Neighbors, and anyone else taking the time to read this note,

Happy New Year! I hope that this messages finds you well. We are currently living in isolation with the fear of catching the flu or RSV. We are close to driving each other nuts, but I'd rather go nuts here all together than have Drew in the hospital with a life threatening bug. 

I have spent much of my time this past year involving myself in quality improvement projects with the Cincinnati Children's Cystic Fibrosis Clinic and the Cystic Fibrosis Foundation. So many amazing things are going on right now and I am thrilled to be a part of it all. As you know, Cystic Fibrosis is considered and "orphan disease" because so few people have it. Because of this, the value to pharmaceutical companies to invest money in new therapies and treatments just isn't there. Developing a single new drug can cost a billion dollars, so pharmaceutical companies want to create blockbusters for common diseases like Alzheimer’s or cancer to maximize the return on their investment. The Cystic Fibrosis Foundation came up with something called "Venture Philanthropy", where they invest our fund-raised money with the pharmaceutical company to do the research and create the drug, absorbing the early financial risk involved in drug development as a way to entice for-profit companies to get involved in cystic fibrosis research. Amazing things are happening. There is a drug on the market now that essentially cures about 4% of the CF population. A CURE! Because of this successful business partnership, the CF Foundation has invested another $75 million  toward finding a cure for the other 96% of the CF population. There is another drug in the pipeline that will help a large majority of the CF community. There are clinical trials going on right now, and this drug, that will likely help Drew and thousands of other kids with CF, is showing promising results. None of this would be possible without the Cystic Fibrosis Foundation. 

I know that it's easy to get burnt out on CF stuff. I live it. Every. Single. Day. I'm sick of medicines and treatments and appointments and hospital stays and fundraising and everything else in between. But just yesterday a little 8 year old boy lost his battle with CF. I have to continue to fight. I have to continue to email and ask for support and raise awareness. And that's why I'm writing you tonight. 

Earlier this evening, I was on a call about Great Strides, the Cystic Fibrosis Foundations annual walk and largest fundraiser. The topic of the call was growing your team. It's not easy to call and write and email people every year, asking them to donate and walk with us and show their support. I don't like to do it, but it pales in comparison to all that Drew has to do in a day that doesn't feel good and that he doesn't like to do. Drew looks like a normal kid. What most of you don't see is the hours that we spend on a daily basis administering medications and doing different therapies. You don't see him cry 3 times a day every day when I have to do a nasal rinse that he hates because Cystic Fibrosis has left him with severe sinus disease. He rides in the car hooked up to a nebulizer machine to get his afternoon medicines in so that we don't have to stop our play time to get it done. Instead of visiting his grandparents in Connecticut this summer, he was stuck in Children's Hospital of Philadelphia because he got a terrible lung infection that had him on oxygen and IV antibiotics until he was able to breathe appropriately on his own. He cries when I take one of his sisters to Target but won't let him go because of the vast array of things that he could pick up from a shopping cart in January. 

Whenever we are down and out or just having a bad day because of insurance problems or normal everyday stresses, my friends ask me what they can do to help. Family members and neighbors and sometimes total strangers who catch us in a bind will tell us to let them know if we ever need anything. What we need the most is a cure for this disease. I don't want Drew to have to deal with this anymore. I don't want to have to waste my days on the phone fighting for medications or making appointments or calling about the days concerns. I don't want to have to worry every day that he will catch something that he won't be able to get over or that he will be the next sad story of a young life lost to Cystic Fibrosis. 

I'm asking for your support this year as we walk for a cure. I'm asking your to sign up to walk with us and to share our story and fund raise with us. I'm asking for you to help us find the cure for Cystic Fibrosis. The walk in Cincinnati this year is Saturday, May 18 at 9am. There are walks in every city in every state. If you can't walk with us in our city, walk for us in yours. Gather your co-workers and create your own Doin' It for Drew team. Ask your neighbors and friends if they will support you in supporting us. Raising money to support the search for a cure is the only way that we will get what we want - a life free from Cystic Fibrosis. 

If you can join us in our efforts this year, please visit the Great Strides Website to register for a walk near you. Make sure you register under team Doin' It for Drew. I will support you however I can in your fundraising efforts. If you are unable to join us in our fundraising this year but want to make a donation, you can do so by visiting our Great Strides Page. We truly appreciate you taking time time to read this note and any and all support that you can offer. 

Best Regards,
Erin Moore
Drew's Mom

Facebook - Doin' It For Drew
Twitter - @ekeeleymoore

Tuesday, January 8, 2013

I Got Through!

We are living in isolation right now. I'm so afraid that someone is gonna catch something and then it will spread like wildfire around this house, leaving us sick, grumpy and tired, and if we're not careful, put one of us in the hospital. Drew managed to dodge the bug that we all caught a few weeks ago, but had he gotten it there is a good chance that he would have become dehydrated and put in the hospital. I want no parts of the hospital right now. I don't want to go in for a well check or to pick something up or for anything. I am trying to avoid this horrible flu season at every cost. Diane Sawyer told me that there are 5 weeks left in the flu season so we will remain in isolation and hopefully not make each other totally nuts.

So I reached out to CVS Caremark again last week and hadn't heard anything back. They either aren't taking my offer to work together on a solution seriously, or just don't feel like bothering with me. Then today, I was checking out a CF Mom's Facebook page and there was a post from another aggravated mom about her experiences with CVS Caremark. And below that there were a bunch of replies, all sharing my sentiments. So I re-tweeted CVS Caremark that I wasn't the only one having issue with their service and guess what? I got a response. They want to talk. Last time, they were very helpful in resolving my immediate issue, but the next time I had to reorder I had the exact same issues. And apparently I'm not alone! I don't want to talk to the customer service manager in the call center. I want to talk to their VP of Quality Improvement, if they have one. Or someone who puts all of these rules in place with the "typical" customer in mind, not realizing that someone with a chronic condition is anything but typical. I hope that I can get through to the right person. I am completely aware that calling them just to complain is not going to get anyone anywhere. I want to talk about the problem and figure out a way to work together to solve it. I want the conversation that I have with them to be a productive one. I'll keep you posted on how that call goes! This is more evidence that speaking up and advocating can make a difference!

On that note, the CFF's annual March on the Hill is coming up in a couple of weeks where advocates meet with members of Congress in their DC offices to spread the word about CF and the Foundation's policy agenda and to ask for their support in preserving funding for programs that would affect us. Guess whose going this year???? That's right! We're heading back to my parents in PA for a long weekend and Martin and I are going down to DC for the March on the Hill and the Volunteer Leadership Conference that we were invited to attend. I'm so excited to meet some of the other State Advocacy Chairs at the March on the Hill and to meet some of the incredible Foundation volunteers at the leadership conference and learn more about what they do and how they do it. Its such an honor to have been invited to attend!

Switching directions completely, we've had some mild success in getting Drew to eat. We've tried charts and praise and punishment fun eating tools (thanks grandma!) and just about everything in between, and I think that the answer for us has been twofold. First, its giving him what he wants. Right now he happens to be into pancakes, so we give him pancakes and mix in ground up pecans so he doesn't know they're there and then add a ton of butter and syrup and we have ourselves a nice little super high calorie breakfast. Add to that 8oz of half n half with chocolate syrup and we're in business. His teeth are going to rot out of his head, but at least he will be gaining some weight! Other things he likes this week are grapes and applesauce. I always wash the fruit before I give it to the kids, so what he thinks is just some water on the grapes is actually vegetable oil. Same thing with his applesauce - 1 cup of applesauce + 2tbsp of veggie oil = 28g of fat. He will sometimes eat goldfish crackers or honey nut cheerios, so I have sauteed them in vegetable oil and he has no clue. Vegetable oil is our friend. The other thing that seems to work is to let him eat when he wants to eat. The more we were pushing it the less he wanted to eat. He knew he was getting our attention by doing it and it was a gigantic fight every night. So if he doesn't want to eat, he just sits at the table and we ignore him and he sits happily, usually drinking he H'n'H, and we all go about our dinner. It doesn't go like this every night, but at least we're making some steps in the right direction.

When he was just a baby, he had this puking thing going on for a while, long enough so that they had to admit him because they didn't know what was going on and feared that he would become dehydrated. They ended up diagnosing it as Post Infectious Gasteroenteropathy (or a stomach bug) and his bowels [which had undergone several surgeries] just weren't able to tolerate anything. Anyway, when he was in the hospital there, they did this stomach emptying study that showed that he had a little bit of a slow stomach emptying. At the time, it was nothing that would have been causing the puking that was going on, but now that he doesn't ever really seem to want to eat, I'm beginning to wonder if its just because he doesn't digest food that quickly and truly just isn't hungry. Or maybe its what he's eating. I know that he needs it, but good Lord if I ate as much fat and oil as he does in a day, I certainly would not be feeling terrific. So who knows. At least he's eating something, so I'm happy about that. I try not to worry to much about him when the docs tell me not to, but its hard not to worry. I just need to him stay as healthy as possible for as long as possible, until Vertex or Pfizer figures this thing out and makes the cure in the form of a pill. We're close!

Only a couple of weeks until our big meeting with the CFF about the C3N for CF! Below is our project overview. I think (read: hope) that this will change the way we manage CF and believe that this will improve outcomes. Read it! Watch it in action by clicking here (start watching around the 17min mark to get the guts of the presentation). Join us in perfecting this. We need to leverage the expertise of parents, patients and physicians. And I secretly publicly wish that could or will be a part of this.  I can't wait for this meeting!

Chronic illness kills too many and costs too much. Reducing this burden is possible, yet within our current health care system, Americans receive about 50% of indicated care and patients follow doctors’ orders about as often. What if there was a way to create a vastly better chronic illness care system by harnessing the inherent motivation and collective intelligence of patients and clinicians? What if this system allowed patients and physicians to share information freely, collaborate to solve important problems, and use their collective creativity and expertise to act in ways that improve health? A system for transforming chronic care is possible – we intend to build it by designing, prototyping, optimizing, and evaluating a Collaborative Chronic Care Network (C3N) for pediatric cystic fibrosis (CF).

The C3N is modeled after collaborative innovation networks (COINs), virtual teams of self-motivated individuals with a collective vision, enabled by the Web to achieve a common goal by sharing ideas, information, and work. COINs are not new – collective intelligence has existed at least since humans learned to hunt in groups. The internet, though, has allowed COINs to deliver their full potential, with Wikipedia, Linux, and the World Wide Web Consortium itself as prominent examples. COINs are, however, new to chronic illness care and, while many doctors and patients use the Web to search for and find health information, existing health-related social networks separate patients from providers, despite the fact that patient-provider interaction is key to chronic illness care.

Joining patients, parents and providers (physicians and other clinicians) in a shared collaborative network is a radically innovative approach in health care. It challenges the dominant chronic illness care system or paradigm, which views patients as objects on which to intervene, structures care around episodic one-to-one patient-physician interactions, and assumes an inherent power differential based on knowledge. The C3N will challenge the paradigm by engaging patients and their caregivers as co-equals, by making interaction continuous through asynchronous one-to-one and one-to-many communication, and by leveling the knowledge gradient. Moreover, while many social learning theories yield simple mechanistic formulas for behavior change, a C3N acknowledges the inherently complex nature of human behavior and provides the means to describe and understand emergent behaviors.

A C3N for pediatric inflammatory bowel disease (IBD; Crohn’s Disease and ulcerative colitis) has been designed and is currently being tested within the ImproveCareNow Network, an active, open learning health network that uses collaboration and data to drive improvements in the care and health of all kids with IBD. Currently, ImproveCareNow now has 49 participating centers in 27 states and London. These 49 centers have 440 pediatric gastroenterologists and nearly 15,000 IBD patients. The C3N for IBD has designed over a dozen innovative solutions for IBD patients, caregivers, and clinicians that include mobile health applications, an individualized treatment design and evaluation platform, tools to increase engagement during the clinical encounter, and community leadership opportunities, among others. The global aim of this work is to create and implement a C3N for CF. 

Thursday, January 3, 2013

Speak out. Get involved. Inspire action.

"When my kids were young and they were diagnosed with cystic fibrosis, I made a promise that I would do anything in my power to protect them", says Angie Kinney from Pennsylvania. "When I learned about how easy it is to reach out to our elected officials, and how much power they have to really make a difference for us, how could I not do it?"

Watch Angie talk about why she got involved in advocacy and how you can make a difference: Are you in?

Speak out. Get involved. Inspire action. Together, we can advance research, protect access to care and raise awareness of CF.

Wednesday, January 2, 2013

Dear CVS Caremark, its me again

Good Afternoon -
Just me again. I wrote you a few months back re: the nightmare that is reordering my sons monthly prescriptions. I appreciate your having someone call me to get me what we needed in time for our trip, but as evidenced by a phone call I received earlier today, the bigger issue remains unresolved.

As a refresher, my son has Cystic Fibrosis. He takes a number of oral and inhaled medications several times a day, every single day, to keep him healthy. Once a month, at a totally unpredictable time, my phone rings and it is a robot telling me that it's time to refill one of his medications that I am required by our private insurance to have filled by you instead of the pharmacy where we have his other 7 prescriptions filled without incidence every month. This robot asks me a couple of questions and, if I answer appropriately, promptly connects me to a customer service rep who has exactly no idea why I have called. I didn't call, remember? You did. Anyway, in the chaos that is any house with young children, I only occasionally get directed to the clueless customer service rep, as the screaming children in the background is sometimes interpreted by the robot into "I'm all set and need no further assistance". It would be more appropriate if he called the police based on the sheer volume of the chaos as its more likely that I'm being robbed or assaulted than needing no assistance. I digress.

After spending probably 2-3 minutes on the phone with the robot on the occasions where I do get through to a person, I then spend anywhere between another 5-10 minutes answering questions and making arrangements to have this medicine delivered and signed for at a time that's convenient for me. It's funny that you use the word "convenient". You "conveniently" offer delivery between 9am and 7pm any day that I'd like, but "not-so-conveniently" require that I be home in the aforementioned time frame to sign for my package. Unless one of my children has broken an arm off or is running around with a stick in their eye, I wait for that package to come. I rarely go out, but to drop off and pick up kids at school. That window of time you give me is simply unreasonable, therefore making a signature requirement unreasonable. You're not delivering a narcotic. As far as I know, this drug is only useful to people living with Cystic Fibrosis and a select few who may have serious sinus disease. Meet me half way here.

So here's what ruffled my feathers today. I got "the call" right around lunch time. I shoved enough food into my kids mouths to shut them up long enough for me to get through to the clueless human. After about 10 minutes and one period on hold, I was informed that my prescription was expired. Huh, that's funny because last month when we went through this process you informed me that it would be expiring and that you would contact my doctor to ensure that there wouldn't be a hiccup such as the one we're currently experiencing. In case it's not in your notes, you're not sure what happened and you are going to get this taken care of by calling my sons doctor after we hang up. I beat you to it. We hung up, I called them, they will call you, and I will call you back tomorrow to make sure his medication is actual going to ship as you said it would so that I can appropriately plan my Friday at home waiting for his medicine.

My problem here is your complete unreliability and the time burden you put onto someone who does not need anything extra to fill her time. You do not do what you say that you will. There have been times when you have no record of our calls and conversations. I answer the same questions for you over and over, wasting my time and yours, and spend WAY to much time fighting with you about all of this stuff. It's like I'm stuck in a bad relationship but divorce isn't an option. So I'm offering you a solution. I haven't thought it through completely, but I have faith in the project and I have faith that by working together we can make this relationship work. What I'm suggesting is getting involved with the C3N Project. Consider it a counselor who can help us to repair our relationship. We share ideas with each other and others who have walked in our shoes and we work together to find a better way. It's being used with doctors and patients, so why not you too? You're a huge part of the chronic condition world and you should care enough about your patients to want to lessen the burden of living with a chronic disease, even if that means simply freeing up the time spent on one ridiculous phone call every month. We have enough going on.

The C3N was piloted with IBD but we're bringing it to CF and other chronic conditions. This is an invitation for you to be a part of the future of medicine and disease management. Together we can improve outcomes for both of us. Let me know what you think. I can't do this again next month. Check out the C3N website, or watch this video about its practical use and lets work together to see where you fit in. I'm sure we can find a place!