Sunday, October 28, 2012

A little bit about the NACFC for the CF newsletter

A few weeks ago my husband and I had the opportunity to attend the 2012 North American Cystic Fibrosis Conference in Orlando, Florida. Nearly 4,000 doctors, researchers and other clinicians from around the world came together to share their latest research and use one another to better their clinics and improve our lives.  

As you may know, Kalydeco was approved earlier this year.  Kalydeco is a breakthrough CF drug that has dramatically improved the outcomes for about 4% of CF patients.  At the conference, doctors and researchers explained their plans and the message was clear - they feel closer than ever to bringing life-changing breakthroughs to all CF patients.  There is still a lot of work to be done, but there were thousands of people at the conference who will not stop working until they have achieved that goal.  I heard determination from brilliant scientists to continue developing new therapies until 100% of the CF population can see benefit from them. There was confidence that a cure will be found. 

While the search for the cure was and continues to be the foremost goal in everyone's mind, there were dozens of sessions focused on making life better while we wait for that cure. These sessions covered topics from new and emerging therapies to infection control guidelines to understanding and improving adherence. I heard many talks about the vicious cycle of inflammation, infection and obstruction, in both the airways and the gut. I sat through session listening to all of the new and upcoming studies using social media to better connect either patients to other patients or patients to their doctors. There were people who had made it their mission to improve healthcare outside of the clinic by providing patients with a card that allowed clinicians who were less familiar with Cystic Fibrosis to properly care for them. Doctors and scientists presented cases both for and against the use of regular CT Scans in CF.  Respiratory therapists discussed what was working with the current neublizer systems and medications and how newer, more efficient machines and different forms of medications could help to alleviate the time burden already weighing heavily on people with Cystic Fibrosis.  There was a clinic that had streamlined the process for starting antibiotics once being admitted to the in-patient floor.  I heard about the latest studies of a new drug, VX-809, and how it will help people with the f508del mutation.

Even as we all wait for "the cure," it was clear that caregivers are working with new and existing therapies to improve outcomes today. Things are changing very fast, and nobody has all the answers.  Still, sitting through all the sessions, we got to see caregivers from across the country sharing stories and research results, to find those answers.  We also saw just how much of a role we all have to play in helping them.  Even the best doctors don't know as much about our kids as we do - they rely on our input to know what is working and what isn't.  If the burden of treatment is too much, or if treatments are causing more problems than they are solving, they need us to tell them.  If we have questions about medications or therapies, we need to speak up and ask. We need to work together with the medical professionals caring for our kids. They need us as much as we need them. 

It was such an honor for us to be able to attend this amazing event. It was inspiring to see how hard so many people are working to cure this disease. It encouraged us to continue being involved - working with our clinicians, participating in research studies, volunteering at fundraising events - as the results will directly benefit our son. 

Tuesday, October 23, 2012

I was asked to write up something for the newsletter for both our local CF clinic and the CF Foundation about our experience at the NACFC. I've sat down several times now to get something started and I draw a blank. Not on what went on at the conference, but what to tell people about. I guess I could list out all of the wonderful sessions we went to or pull out the highlights. I could go through my notes and lay out the questions that I had before I went in and all that I learned over those three days. I'm just having trouble doing it. Little bits and pieces come to me when I'm driving in the car or in the shower, but as soon as I open the computer I'm at a loss. I've got one week to get it together. Wish me luck!

Drew has started coughing a little bit again. It started last week when we got home from Disney. I assumed that he would probably pick something up down there, or in one of our rest stops along the way. I took him in for a Viral Panel and Respiratory Culture this weekend. The viral panel came back neg and we are still waiting on the culture results. Cue the anxiety. Hopefully its nothing. I'd love to see this kid just get a cold and get over it. He's not coughing a lot. There is no runny nose or sneezing or anything like that. But he's not eating again either, and that seems to indicate a problem. I guess we will just have to wait and see what the culture shows. Fingers crossed for nothing.

I might be the only mother in the country who hasn't got Halloween costumes for my kids yet. I have no clue what the twins will be, or Jake for that matter. In all likelihood, Jake will be asleep long before the kids even go out for candy. Ella wants to be Doc McStuffins from the Disney Channel. I bought her a lab coat and when she tried it on got all bent out of shape because it didn't look enough like Doc McStuffins coat on TV. She's a real treat lately :) I better get my act together, as we have a costume party to go to on Saturday!

This Friday night is Run Like Hell. We don't run, but do enjoy volunteering down there to see all the great adult costumes. Naturally, its 70 degrees here this week and the high on Friday is something like 45 with a great chance of rain, so that should be awesome. Its for a good cause ;)

Finally, in case you haven't had the chance to check this out - CF care habits are important for people to follow as they are striving to stay healthy. In a brief video at CF Livinghear from CF patients, caregivers and experts who share tips on treatment schedules, good eating habits and the importance of exercise. Its a pretty cool website all around. 

More to come on the conference, as soon as I lose this writers block!

Monday, October 15, 2012

Establishing Healthy CF Care Habits

Coming out of the NACFC, I have to say that now more than ever, spreading awareness and sharing information is paramount as we near our cure. CF care habits are important for people to follow as they are striving to stay healthy. In a new brief video at from CF patients, caregivers and experts who share tips on treatment schedules, good eating habits and the importance of exercise. Check it out and share it with your friends, family, caregivers, whoever! The impact that these videos have is bigger than you think. Just to give some background on previous videos I've shared, specifically, “Accepting and Living Your Life with CF,” here is some feedback received by folks over at CF Living :
·         “Ali Christenson's story really helped me because she talked about roommates and college and how she handled that, and that is the point I am at in my life right now. And I am actually going to the school that she went to so I know that if she was able to handle it and her roommates accepted her then most likely mine will too.”
  • “My 2 1/2 year old son has CF, it has taken over my life, and I am not coping well.  I don’t want to pass on that attitude to him.  I pray that he will embrace CF as well as these young people have, and that starts with my attitude. Thank you for sharing your stories.  I admire your strength and spirits. God Bless you all.”
·         “This video taught me that you don’t have to hide your cf from others, but to allow acceptance from others.”

This new video on establishing healthy CF care habits features:
·         Ronnie Sharpe, CF patient, author of and co-founder of;
·         Isabel Stenzel Byrnes, CF patient, social worker and co-author of The Power of Two: A Twin Triumph of Cystic Fibrosis;
·         Kat Quinn East, CF parent and founder of the Blooming Rose Foundation;
·         Jacob Greene and Casey Greene, CF patients;
·         Emily Schaller, CF patient and founder/president of The Rock CF Foundation;
·         LaCrecia Britton, CF Coordinator, RN and CPNP.

Check it out!

The one where I start to write about our trip

I don't even know where to start. I'm still on such a high from the events of this past week. It all started with a 16 hour drive (that went surprisingly well!) last weekend to Orlando. We got to the resort we were staying at around 4:00 on Sunday afternoon and plotted out our Disney adventure. Monday morning, we loaded up the car and headed to the Magic Kingdom. It started off something less than magical. We waited in line for 30 min to meet Tinkerbell, which ended up being one of the highlights of the trip, but starting off with a 30min wait was taxing on interest and attention of our 4 small children. Excitement started to build after that, and continued with a ride on Aladdin's magic carpet ride. The next stop was Pirates of the Caribbean, which quickly induced both fear and panic and had everyone wanting to go home. It was 10am. Throughout the rest of the morning and early afternoon, our time was split between waiting in lines to meet characters or go on more age appropriate rides. They were all really enjoying themselves but they were beat. We made it to the parade at 3pm and then headed home, exhausted. They are all a little too young to really understand all that was going on. I can't say that we saw sheer excitement in anyone. It was more of bewilderment and confusion filled with some laughs and smiles.

The second day of our trip took us to Hollywood Studios. Disney Junior resides here and we probably could have sat and watched that show a dozen or so times before anyone really got tired of it. We did the Toy Story ride, saw Beauty and the Beast, the Cars Stunt Show and visited with Sully and Mike from Monsters Inc. Tuesday also ended with a parade, definitely a high note for ending a hot day at the park.

On Tuesday night, my parents flew down to meet us and joined us at Animal Kingdom on Wednesday. The Safari was pretty neat to go on. We met Pooh, Tigger and Eyore and also enjoyed a character lunch where Goofy, Mickey, Donald and Daisy visited with us while we ate. We decided after lunch that we wanted to head back over to the Magic Kingdom to wrap up our trip. After $45 worth of balloons and $150 worth of hats and stuffed things, we watched the parade, met the princesses, and called it a trip. Everyone had their favorites, but the parade each day was top of the list for everyone. The whole trip was exhausting but a lot of fun and we have tons of great memories.

Then came the North American CF Conference, otherwise known as the primary reason for our trip to Orlando. It was so amazing. There were dozens of sessions going on at all times over the course of three days and we couldn't go to all of them. We picked out everything that we found to be most interesting and divided and conquered. I thought that much of it would be over our heads, but it wasn't. It was definitely mostly scientific, with doctors and researchers presenting the results of different studies and projects. I haven't even unpacked yet, but once I have the chance to go back through my notes and the program with everything that was covered I will definitely have more to say and share. I tweeted the sessions I attended and some key things that I heard @ekeeleymoore for anyone who cares to check it out. I already put a pitch out on Twitter for a sponsor for the 2013 conference because I would love to go back.

Alas, I must get back to reality and do some dishes and wash and drive the bus to and from school. Hopefully the excitement from Disney and the conference will stick with me for a least until the holidays get here :)

Saturday, October 6, 2012

They made it right!

Well, I wrote the letter to CVS Caremark, posted it on Twitter, got a response from them apologizing for the trouble and asking for my contact info, had someone contact me, and got the medication in time for vacation. I was very pleased and impressed with their commitment to correcting this problem and ensuring customer satisfaction. And while I got everything that I needed for Drew to go on vacation, the bigger issue still remains. CVS Caremark is going to call me again next week once we return home to work out the overrides that I need for our other medicines and get everything sorted out for me. But why did it have to come to this? Why, for 9 months this year, did I have to spend hours on the phone explaining myself to customer service rep after customer service rep after manager after doctor and nurse and receptionist, etc., EVERY FREAKING MONTH! Why is there such a major disconnect between people who should be working together (doctor, patient, pharmacy, insurance). Taking the patient out of that group leaves everyone with nothing. So why not include us to figure out how to make it work for everyone?
I think that I am a rather outgoing and often outspoken person. As frustrating as all of these phone calls are, I am relentless until I get what I want (or a close-enough alternative). Many people do not feel empowered enough to do that. Many people simply don't have the time. There are a slew of reasons that other folks might not take the same steps that I do. And the sad part is that their kids suffer for it. But it's not their fault! I don't know whose fault it is really. I guess a little bit of all parties involved. When insurance companies create their policies and pharmacies create their policies and doctors write their prescriptions everyone should be working together to ensure that systems work. There shouldn't be these hiccups and kinks in the process. Maybe they don't realize it's happening. I'm certainly not mad at the person on the phone filling my prescriptions. I may take my frustrations out on them, but they are just doing their job. I don't know what the answer is. I'm happy that my problems were addressed and taken care of. I'd love it if it were a permanent fix, but alas, work will change insurance companies or policies at the current company will change or my file will go missing as it has before. I wish there was a way. I'm going to make this a priority with our Quality Improvement team as we transition off of our current initiative because I know that we are not the only ones who suffer these monthly headaches.
So thank you, CVS Caremark, for righting your wrong. I appreciate your timely help, as it will allow me to enjoy our vacation knowing that Drew has the medications he needs. And if you have interest in further collaboration, you know how to reach me!
- Posted using BlogPress from my iPhone

Wednesday, October 3, 2012

An Open Letter to CVS Caremark

To Whom It May Concern -
The other day, I called my pharmacy to have my sons prescription drugs refilled. He uses these medications daily to keep him healthy, as he has Cystic Fibrosis. I explained to the customer service representative that we were requesting a refill a few days early as we are leaving for vacation on Saturday morning. To be clear, my prescriptions should be available to refill on Thursday - I called on Tuesday requesting the order be processed two days early. I was informed that only 4 of my 5 medications could be refilled because you weren't allowing an early refill override on one of his drugs. It's Pulmicort - an inhaled corticosteroid steroid that helps to relieve inflammation in my sons airways. It's not a narcotic and not a drug we are requesting early because we are abusing medication. We will run out before we return home from our vacation.
You may be wondering why we are having our prescriptions filled at another pharmacy. Great question! Let me preface this all by telling you a little bit about myself. I am the mother of 4 small children (oldest is 4, youngest is 6mo, two in the middle). I have a bachelors degree in marketing and had a great job until I decided to stay home and raise our family. On top of raising our family, I chair the Quality Improvement Team at the CF clinic at Cincinnati Children's Hospital. I work in the NIUC as a parent TOUCH volunteer twice a month. I am the State Advocacy Chair for the Cincinnati Chapter of the Cystic Fibrosis Foundation, meeting with Senators and Congresspeople to share the policy agenda of the Foundation. I don't have time for this bullshit.
There are several reasons that we don't get our prescriptions filled through CVS Caremark pharmacy. First and foremost, we have a secondary insurance - Ohio Bureau for Children with Medical Handicaps (BCMH). They cover the co-pays and whatever else you do not cover. They will only allow for a 30 day supply of my sons medications at a time. You require that we get a 90-day supply. When filled through your pharmacy, I am left to pay to co-pay. A co-pay is a small fee when you have a healthy child who may need an antibiotic or something once in a while. When you have a child who is on 7 medications daily, when he is healthy, the co-pays on all of his medications add up to several hundred dollars a month. To work around this dilemma, I spent hours (no, I'm not exaggerating in the least) on the phone with your company working to get overrides allowing us to have his prescriptions filled at the CF Services Pharmacy where they will provide a 30-day supply free of all charges. These overrides, despite my best efforts, aren't permanent. I do this annually. And this year, although I fought the good fight, I ran out of time and energy and was left filling the prescriptions for two of his drugs through you. Small co-pays, but the real inconvenience is having to manage re-ordering his drugs from two different places - more trouble than you can imagine. I am always on the phone longer that I should be when reordering. You ask the same questions every time when I feel you should already have some of that information. You require signature on delivery for his medication, yet tell me that they will be delivered between 9am and 7pm. In case you missed it above, I have a very busy life and this system is not working for me. Yet I am at your mercy. I am the patient. Without my medical needs you would not be in business. We should be working together.
I understand that you have policies and procedures in place, but there is a fundamental flaw when a program designed to help sick patients is causing more stress than anything. My children are frustrated with the time I spend on the phone between pharmacies and doctors transferring and writing new prescriptions and explaining 9,000 times why we need to do this. How about collaboration? How about sitting down and talking with some patients or parents about what a good system looks like, how we can make this work for all of us? How about thinking about the patient first?
It is stressful enough having a child. Multiply that by 4. Add a life shortening genetic disease. I don't need this extra, unnecessary nonsense. I would love to sit down and talk with you. I would love to understand why your processes work they way that they do and offer my thoughts and suggestions for how to make it better. At the end of the day, the most important thing to me is the well-being of my family. Help me to make providing that a little less painful.
Kind Regards-
- Posted using BlogPress from my iPhone