31 May 2015

Designing a new way of CF Care - an update

Last week I was privileged to attend the second CF Care Model of the Future meeting.  This project brings together 40+ clinicians, researchers, patients, caregivers and Cystic Fibrosis Foundation representatives charged with completely redesigning the way we do CF Care.  I thought I'd share about the work being done and where we are in the process.

Cindy George (RN and CFF representative), myself, Erin (a CF mom) and Emily (adult with CF) capture a picture of a friendship that has been created from hard work, difficult conversations and the sharing of lots of good ideas!

After our first CF Care Model of the Future meeting in January, we all split in to multiple groups to focus on improving different aspects of CF Care (e.g. "Quality Improvement and the Care Center Network", the "CF Registry", "Patient-Generated Health Information", "Community Integration", etc.) For four months, our respective work groups met weekly via phone and video chat to discuss the myriad areas of which CF Care is involved and dreamed up ways they might be improved.

Eight weeks in to our regular meetings, each of the groups submitted their ideas for the larger CF Care Model community to see.  In total, we came up with 77 different ideas for projects, improvements or programs that we believe could benefit the way we do CF Care.  These ideas are not complete but are certainly a good start to improving the system.

This is a list of just some of the 77 ideas presented at the CF Care Model of the Future Design Meeting.
Because this is the part that gets me super excited as a CF mom, here are just a few of the ideas that were dreamt up: a more patient-centered accreditation process for CF Care Centers, an online "exchange" where all CF stakeholders could share their ideas, documents, pictures, etc. as a way to share information and quality improvement projects, a patient and family research advisory committee, personalized CF treatment plans, crowdfunding for CF research, patient access to medical records, home health/mobile monitoring guide, a repository for de-identified N=1 study data that is readily accessible in the CF Registry, real-time search tools in the CF Registry, a virtual playbook that would allow CF patients to share the ways they have "hacked" the system to benefit their care, an online CF Dashboard that could provide all of a CF patient's or CF Clinician's data in one place, use of telemedicine, methodology and engagement standards across the Care Centers, patient and family quality improvement training, a collaborative quality improvement network, a mentoring program, etc.  (I could go on and on...but aren't those awesome!?)

At this in-person meeting, each of the work groups presented their one or two favorite ideas to the entire group.  It was really fun to see how well some of the ideas had been refined.

After presentations of just a few of the good ideas, everyone at the meeting was asked to rate (not rank) the ideas so that we could all get a better idea of what ideas the group believed we could begin to work on further first.

Every idea is a potentially good idea. No ideas have been thrown out or declined.  Some ideas were just moved up in order of easiest to implement and highest impact/potential to help the community the soonest.  Everyone knows time is of the essence.

Michael holds the microphone and shares data from our ideas.  The ideas that were ranked as having the highest impact but were also the easiest to implement now include: pre-visit planning, automated care management tools, a platform for efficient, effective and transparent knowledge, a pediatric to adult transition program co-designed by patients, caregivers, clinicians & coordinators, a collaborative QI network, CF-specific central IRB, transparent Center-level data sharing and a national CF Parent and Family Advisory Council Network.

A word of caution, the list above isn't necessarily what ideas is going to be created first.  But these are the ideas that will likely move towards further development and testing. 

CF patients are an integral part of our work.  Even though most all of them could not be present due to cross-infection issues, they were a very present voice in the room virtually.  I always always love hearing the voice of a CF patient.  Nobody cares more and has more at stake than they do.

One of the ways that we evaluated an idea was through the use of personas. Personas were fictional people who were created from real CF patients/stories.  The goal of the personas were to evaluate how an idea might benefit a CF person and the complications a CF person might have with engaging with that improvement.  Two really smart researchers who did this kind of stuff for a living did this for the CF Care Model project.  Here are just a few examples of the personas they came up with:

Every person has a story and lives within a system.  The use of fictional personas when creating CF Care helps everyone think through an idea from the perspective of someone battling the disease.

Throughout the presentation and ideation of new ideas, we were asked to consider which personas might benefit and mark this on our sheet.

Our tables were filled with all the essentials to a creative ideation session: candy, markers, post-its, and toys.  The bottle of hand sanitizer is pretty standard at CF functions (all those in the world of CF are aware of germs).  Microphones were at every seat so that Virtual participates joining us via webcam could hear the discussions.  The bottle of enzymes were for the CF empathy card:

Several times a day, someone would stand in front of the room and instruct our tables to use our CF Cards FOR Humanity.  These cards had on them small CF-related scenarios (either from the focus of a CF patient or a CF Clinician).  We were instructed to do what the cards suggested on them and answer the corresponding questions.  The goal was to learn to feel what it's like to be a CF patient.  Everyone felt these were very helpful in becoming more empathetic to an experience that is otherwise difficult to understand.

Most of our time was spent discussing where to go from this point in our work.  Usually there was a consensus.  But, at one point, the conversation became very tense as there was discussion and some disagreement on whether or not our measurable goal of the new CF Care Model was high enough and whether or not the system we are creating is revolutionary enough for CF Patients.  It became clear that despite our best efforts, we still have more work to do.  I am SO thankful for the CF patient who lead this discussion by expressing she did not feel this was good enough.  No one is ok with settling with simply "filling in gaps" in the current model.  We all agree that we must change the model completely.  Now that is exciting!

While it's likely that our CF Care Model global aim and goals may be strengthened, I did like the primary drivers that this system is being built under.  These primary drivers describe the kind of system we want.  We want a system that offers reliable, personalized, evidence-based timely care, provides whole health wellness for people & families living with CF, tends towards better value for care, includes a vibrant CF Community and Quality Improvement Network, encourages joyful work conditions for those providing care to people with CF and makes way for better, faster and cheaper research.

A lot of ideas were considered and evaluated.  Some of the ideas were presented in depth.  Some ideas were merely mentioned.  Goals were created for our team to consider.  Some of the goals were not lofty enough - is it adequate to say we are happy with a CF Care Model that increases life expectancy alone - or do we want more?  Is it good enough to set our goal to be a "normal" FEV1 and BMI for all or is that too low of a bar?  This is what we are currently considering.

One really interesting thing of the day was when this robot guy started rolling over to our table at lunch.  Apparently the robot is called a "Nomad" and is basically an iPad on wheels.  Our friend Dan, who is a CF patient who was attending the meeting virtually, was given the controls so that he could control the Nomad and come talk to our group (or any other group in the room he wanted).  The iPad had a microphone and speaker so we could hear him and he could hear us.  It was both very cool and freaky to experience.  I love how the CF Foundation is working hard to make the virtual experience the best it can be for CF patients.  This was the first time this technology has been used at the CF Foundation.  

At one point, Avonlea and Bennett made their debut at the meeting when Erin showed a video of CF children dancing to the song "Happy."  The goal of playing the song was to get everyone up for a physical activity and to remind us all why we are doing the work we are done.

Andreas, a CF dad from Sweden, and Arrica, from the Dartmouth Institute collaborate on CF Care.

Like at our last meeting, posters filled the room, hanging even on the doors, as we had multiple ideation sessions looking at how we can improve CF care.

Dr. Dasenbrook, a CF doc and Chris, a CF Foundation representative talk at their table during a lunch break.  Even during our breaks, we were most always talking about improving CF Care.

These three young women, who work for the C3N Project, are the rockstars of the meeting.  They were constantly behind the scenes taking care of the details and logistics throughout the meeting.  There are quite a few others who are equally amazing, including but not limited to, Sophia, George and Karen (not pictured).

Where do we go with good ideas that are ready to be put in place?  We will begin to prototype some ideas to hopefully begin putting them to the test.  Are they good ideas?  Will they work?  Do they help us do what we want them to do?

Even though some ideas will be better evaluated first, all of the ideas looked at more closely (new ideas will emerge; some ideas may be put on hold).  I love this picture of our design process.  Even though all good ideas will start out along a similar path, testing can cause ideas to take different paths.  It's important for all of us to be patient with the process.  (Doesn't this sound like the clinical trial process?)

Our meeting came to a close after 1.5 days of work together.  Even though the meeting is over, we will continue to work in our teams on moving the ideas from design to prototype to pilot to implementation. We have to remember we are not building a machine. We are creating a system.  Components will be individual and personalized, not one-size-fits-all.  We are trying to transform a system that provides best support to ALL people with CF, including healthy, sick, old, young, etc.

To continue to follow what's going on with the CF Care Model of the Future and/or to share your thoughts, feelings and ideas, tweet and "listen" under the hastag #cfbigidea.

28 May 2015

Patients don't need permission.

Our 2nd CF Care Model Design Meeting, which just finished yesterday, went really well.  I will soon post more about what we did.  Until then, feel free to check out these storify links: Day 1 and Day 2

But I wanted to share the biggest take-away I gained from my attendance at the 2nd CF Care Model Design Meeting and why it matters:

Patients don't need permission.

This new understanding has rocked my world and I think it will continue to rock my world - because it's implications will continue to reverberate through everything I do from now on in CF care.

I'm naturally an entrepreneur.  I like to dream and create.  I like to reevaluate and redesign.  I don't like accepting no.  And I don't like playing by the rules.  Sometimes, this gets me in trouble.  But more times than not, this actually moves me forward - especially when I can find others like myself who are doing the same thing.

I'm not unique.  Americans, in general, tend to be this way.  We make our own paths.  We live in a country and culture that encourages this somewhat-rogue behavior.

And yet, one area where I see myself and others struggle with embracing this idea is when it comes to health care.  When you have CF, health care is so much of your life.  So, it's interesting that I would struggle to embrace my entrepreneurial spirit in such an important way.

I am rule-maker in so many areas of life.  And yet, in health care, I've bowed to the implicit rule that patients must play by the rules - follow the doctor's orders - do what we are told to do.  I think it comes from a fear - a fear that if I don't do what the doctors say, I won't be given good care.

The health care system even as a name for this "do what I say" rule: adherence.  As a patient, if I don't do what my doctor says, don't take my meds the way to bottle prescribes, don't follow the medical protocol my doctor has created, I can be labeled as "non-adherent."  This fear of being labeled non-adherent is very real.  For those with CF being evaluated on the transplant list, being a non-adherent patient can actually keep them from access to a chance for healthy lungs.

Thankfully, health care is changing.  Slowly there is a shift in health care from a paternalistic way of doing things (the type of health care where the patient passively does what the wise/expert/all-knowing doctor says) to a greater partnership way of doing things (patient and doctor work together to address problems where the patient makes the ultimate decisions on his/her care).  But it's a slow process.

Even then, I thought I'd embraced this way of doing health care as much as I could.  I changed CF doctors several years ago so I could be more in control of the decisions in Bennett's care as I wanted our CF clinicians to be our CF consultants, no longer the all-knowing CF experts whom I had to agree with and "obey."

But, this past week has taught me that, unknowingly, I continue to play a passive role in Bennett's care.  I still tend to believe that the way CF care is going to improve is for someone else to initiate it - someone else to start it - someone else to lead.   I have looked to my CF doctor to do it.  I have looked to my CF Care Center to do it.  I have looked to the CF Foundation to do it.

In many ways, I have received the leadership I have wanted.  The CF Foundation, my hospital, the CF Clinic, the CF clinicians are also wanting change and they have made efforts to do so on varying levels. This blog post is of no indictment on their work. (It is, in fact, the CF Foundation who helped make it possible for me to learn, grow and gain this kind of insight this past week at this meeting.)  

My personal struggle is that the change that needs to happen is not happening quickly enough.  Foundations, hospitals and clinicians are, in many ways, large systems that, even at their greatest efficiency, are simply unable to move as quickly as the progression of Cystic Fibrosis in my child's body.

In my frustration, I have blamed.  I have felt neglected.  I have been disappointed.  I have thought myself powerless.

But, this week, I realized, I do not have to wait for hospitals, clinic, clinicians or foundations to make the change I want to see.

The power lies within me, the patient.  And I don't need anyone's permission to find that power and use it.  

The reality is the power lies in every stakeholder in CF care.

If I have a good idea, I need to share it.  If I have a community, I need to organize it.  If I have resources, I need to put them to use.

I'll be honest, I thought I was already doing this.  I thought, by being a Co-Chair of my CF Clinic's Patient Advisory Council, I could make movement happen.  But, like all those from whom I've sought permission, I have run into barrier after barrier...and I've waited for the people in charge to remove those barriers for me...completely unaware, the entire time, that I had the ability to do so myself.

For example, our children's hospital will not let our CF Clinic Patient Advisory Council create a website or FB page.  Our CF Patient Advisory Council has been told we cannot share our meeting minutes with our CF families.  One of my CF clinicians told me I couldn't continue to email several of our CF team members for they are too "busy" to hear about what we are doing.

As a CF mom, this is unacceptable.  Quality improvement and advances in CF care cannot happen within a closed system.  We need to open it for all to use and see.  Everyone should have access to information and to the community that exists.

For the last 6 months, I have felt frustrated, as though I could not move forward without my Clinic/Hospital/Clinician's approval.  But what I realized is nobody has to give me permission to make life with CF better - my life and those around me.

What keeps me from creating my own website to share valuable information with other CF families (I might not be able to use the hospital's logo but that doesn't mean I can't share)?  What keeps me from developing a network of patients like myself who are not satisfied with the status-quo in CF care?  What keeps me from emailing whomever I want to share about what we are doing for CF patients?  That's up to me.

What I've realized is the limitations I put on myself are imaginary.  When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.  And that is absolutely not true.  The truth is: the power is at the bottom.

I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.  We want them to be a part of what we are doing.  And I believe they will be.  But those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.

We are the experts in our own care.  We just need to recognize the resources we have at our fingertips and put them to use.  We need to wholeheartedly embrace the idea that we, as patients, don't need permission to make our lives better.   The permission is already there.

21 May 2015

Activating People and Families Living with Cystic Fibrosis in CF Care

There is a change going on in healthcare towards patient-centered care.  This is also happening at the Cystic Fibrosis Foundation.  And it's revolutionizing the way we do health care.

One of the signs I see this in my life is in my role as co-chair of my local CF Clinic's Parent Advisory Council (PAC).  The goal of a CF Patient Advisory Council is to allow patients and parents to partner together with their CF Clinicians on improving CF Care through our CF Clinic.  

Each month, I drive four hours round trip to up Dallas in an effort to partner with other CF parents and Bennett's CF Care Team to make sure he, and the other patients at Dallas Children's Medical Center's CF Clinic, get the best of care.

Next week, I will meet again with a group of CF clinicians, researchers, CF Foundation leaders, caregivers and patients for the second CF Care Model of the Future Design Meeting in Bethesda, MD.  Along with our workgroup, I will help present several aspects of a new vision we have for patient-centered CF care, with regard to 
CF Center Accreditation and within Patient and Family Advisory Councils.  

I wanted to share a document that I came across while working with the CF Model Design workgroup on patient-centered CF care. 

I found this timeline to be very interesting so I wanted to share with other CF parents/patients.
The document copied below shows a timeline of how the CF Foundation has moved towards having CF families more involved in what they are doing on the national level.  

I'll share more on this topic soon.  But in the meantime, I'd love to hear what others think about patient-centered CF care and ways we might better appreciate the CF patient/caregiver voice.

"Activating People and Families Living with Cystic Fibrosis in CF Care" 
Authored by Leslie Hazle, Kathy Sabadosa, Terri Schindler and Karen Homa

National quality improvement (QI) initiative launched to extend life expectancy through consistent implementation of evidence-based care.

Parents and patients join CF center care staff at Cincinnati Children?s Medical Center as part of the Robert Wood Johnson Foundation's Pursuing Perfection initiative to improve care.


National QI collaborative actively engages CF care centers, patients and families in learning how to partner and  improve CF care.

Parents of a child with CF and an adult with CF join the CF Foundation's Education Committee.


Strategic planning to set QI Worthy Goals with a primary goal includes patients and families as full members of the care team.

Patient Registry Report links health outcomes to national QI initiative goals.


Web cast highlights Cincinnati Children's CF Center partnership with parents to improve CF care.


CF Foundation publishes all accredited care centers health outcomes on

"Action Guide for Accelerating Improvement in Cystic Fibrosis Care"published and distributed to accredited CF care centers, features engagement of patients and families.


CF Foundation publishes the "Improve your CF Care" toolkit written by and for patients and parents on


Patients and families are included on practice guidelines steering committee and working groups.


CF Foundation's published strategic objectives include: "Deliver high-quality, compassionate
patient and family-centered care through our Care Center Network" and "Help patients and their families find new ways to improve their self-management skills."


First Patient and Family Advisory Board Track offered at the North American CF

Development of a National Patient and Family Experience of Care Survey is initiated.

First year-long QI collaborative focused on adult care is launched.


Patient and Family Experience of Care survey piloted at 25 CF Care Centers.


Patient and Family Experience of Care Survey administered at CF Care Centers undergoing CF Foundation accreditation site visits.

The CF Foundation begins supporting video conferencing in it's efforts so CF adult patients can be involved.

The CF Foundation updated their infection prevention and control guidelines in the spring of 2013 based on research that was also released in 2013.

The CF Foundation creates the CF Adult Advisory Council, which 
was identified as a priority in the strategic plan.

The CF Foundation ends the "Patient and Family Advisory Board Track" at the North American CF Conference, specifically for patients and families.  Instead, the CF Foundation invites CF Advisors/patient families to attend the entire North American CF Conference, reducing the cost for CF Advisors to make it more affordable for CF families to attend.  In addition, the CF Foundation announces it will live-stream portions of the CF Conference for CF families and patients to be involved remotely.

Patient and Family Experience of Care Survey administered at all CF Care Centers.  Every individual and family with CF will be asked to complete a survey every 6 months.  Prior to 2015, the survey was only administered to centers that were scheduled for accreditation site visits by the CF Foundation.

The CF Care Model Design Project and Coproduction Pilot Project launched to develop and implement plans so that all people with CF have access to high-quality, specialized and accredited CF care centers and prescribed therapies.

20 May 2015

Bennett's Brigade Kendra Scott/Baby Bow Tie Fundraiser in Dallas Tomorrow!

We are super excited to attend the tomorrow's second annual 

Kendra Scott - West Village Dallas + Baby Bow Tie Fundraiser 
for Cystic Fibrosis in honor of Bennett 

Tomorrow, May 21, from 5-8pm @ 3699 McKinney Ave c305 in Dallas!

Kat Armstrong, owner of Baby Bow Tie has done amazing job getting ready for tomorrow's fundraiser.  Our family is so grateful for her generosity and hospitality as she is helping to host such a fun party to raise money for a cure for our son!

If you've never been to a Kendra Scott store, you've got to go.  It's pretty incredible.  And there is nothing more adorable than getting to see all of the sweet Baby Bow Ties in person!

We are also so very excited to meet Michelle Staubach Grimes, Dallas-based author of "Where is Pidge?" and supporter of the Cystic Fibrosis Foundation as she lost her best friend of the disease, who will be at the Kendra Scott + Baby Bow Tie fundraiser for a book signing!

I cannot thank Dyan Kethley enough for the beautiful photos she captured at our Kendra Scott + Baby Bow Tie event last year.  These pictures are so fun to go back and look at - we had such fun last year.  And, it's fun to see how much the kids have each grown over the course of the year.

We hope that if you're in the Dallas/Fort Worth area and can make it out to come see us, you will! For our out of town friends, if you'd like to participate, you can purchase a piece of Kendra Scott jewelry or a Baby Bow Tie with proceeds going to the CF Foundation on behalf of Bennett by calling the Kendra Scott store during the fundraising hours of 5-8pm.  Just call 214-528-4800 and they will mail to you!

17 May 2015

Cystic Fibrosis has taught me the power (and gift of) speaking out on behalf of others.

I have spent much time evaluating whether or not to write this post.  I have consulted many people on this decision and given it much prayer.  In the end it may, in fact, not be the right thing to do.  But I also don't think it's the wrong thing.

Cystic Fibrosis has and continues to teach me so many things about life.  One of those is the power (and gift) of speaking out on behalf of others.  Over and over again, so very many people have done it for me - for Bennett - and for our family, telling our story and advocating on our behalf in finding Bennett a cure.  How, I have wondered over and over, can I not do it for someone else?

This post is about Brian's and my friend, Brandon Bostian.  You might have heard about him lately in the news.

There are so few people in this world who love trains more than our friend, Brandon.  Brian and I met each other more than 10 years ago at a campus church at the University of Missouri.  This is also nhw we knew our friend Brandon.  We were all a part of a large community of friends who regularly spent time together on and off campus.

Among our college church community of friends, Brandon's name was synonymous with trains.  He loved talking about them.  He loved thinking about them.  And, we all knew, his life-long dream was to eventually drive them.  Everything Brandon did in college was with the ultimate goal to one day become an Amtrak engineer.

After college, Brian and I became engaged and married (Brandon, along with many of our friends, came to our wedding).  Brian and I moved away.  Brandon eventually moved away too.  We all stayed Facebook friends but otherwise lost touch.

...Until one random day a few years ago when I ran in to Brandon in Washington D.C. of all places, at Union Station.

I was in Washington for the Cystic Fibrosis Foundation's March on the Hill, a time when I advocate on Capitol Hill for a cure for Bennett.

I was with my little boys (Avonlea wasn't born yet and Brian was back at home working) and my parents.  We were about to all have dinner together when I saw a familiar face in the crowd.  It was Brandon.

It took Brandon and me a few minutes to get over the shock of seeing each other in the most random of places.  Well, it felt random for me.  But it wasn't random for him.  Union Station was practically at home, for him.

Union Station is where the Amtrak trains come and go.  Brandon, now an Amtrak engineer, had been off on a break and was hanging out at the station.  In hindsight, instead of being surprised to see him there, I should have known.  This was exactly where to find Brandon - with the trains.

I remember really loving getting to see him.  Our brief visit reminded me why I liked him.  He's a sweet and upstanding guy, the kind of friend anyone would be proud of.

I introduced him to Oliver and Bennett, ages 3 and 5 at the time.  And I introduced them to him.  I shared with Brandon about how I was in DC advocating for Bennett.  He shared a little bit about his experience as an Amtrak engineer.

Our visit was a quick one but it was nice to reconnect - the way good friendships do.

When I returned home, Brandon contacted me via Facebook and wanted to buy a Bennett's Brigade t-shirt.  Brandon wanted to support Bennett.  He lived far away and we hadn't been in touch for several years, but that didn't change who he was as a person.  Brandon cared for people and Bennett, someone whom he had only barely met, was one of those who he cared about.  That meant a lot to me.

Brian and I are overwhelmed with sadness since we learned our dear friend Brandon's name was released as the engineer of Amtrak 188, the train involved in a high-speed accident that killed 8 and forever impacted the lives of all those on board.  We can think of no one more responsible or caring than Brandon.  This accident is a tragedy on so many levels.

Brian and I don't know what happened during the accident.  We haven't heard from Brandon since the accident and I would not expect we will for some time.  CF has certainly taught us about the value of being patient when a trauma happens.  Sometimes the best gift one can give a friend is to just be there, quietly and patiently waiting to help when and if the opportunity arises.

But, in the meantime, we are comforted to know about Brandon is the kind of person who would have done whatever he could to care for his train and the people for whom he was responsible. Ever consistent and faithful, if Brandon said he would do something, we all knew we could count on him to do it.  And, as much as Brandon loves train (which is a a lot), he cares about people even more.

Additionally, Brian and I are mourning all those hurt or killed while traveling on Amtrak train 188. For Brandon and for all those affected, may Psalm 34:18 speak to all those invovled:

"The Lord is close to the brokenhearted and saves those who are crushed in spirit."  

14 May 2015

CF Advocacy: Meeting with TX Medicaid Officials

In January, I was asked by the Cystic Fibrosis Foundation's Public Policy department (in Bethesda, MD) to join them (in Texas) as a CF parent-advocate at a meeting in Austin with Texas state Medicaid Officials, along with several CF doctors and CF clinicians from around the state.  I always jump on a chance to to advocate for  those with CF, so I was delighted to come!

About 50% of children with Cystic Fibrosis and about 25% of adults with CF in the US are on Medicaid.  So, it's very important that those making decisions in Medicaid understand the disease, how daunting it is to just stay well and how important it is to have access to a Cystic Fibrosis Care Center.

Our lobbyist, Laura, explained at one point, "When you get cancer, everyone knows that you need to get to an accredited cancer center, like M.D. Anderson, as soon as you can. What's lesser known is when you have CF, you need to be cared for at a Cystic Fibrosis Care Center."

The CF Foundation is aware that with changing health care laws and the rise in health care cots, there is a genuine concern, for those with CF, that insurance plans will not cover their medications, exclude their CF doctors from being in-network or throw challenges in their way such as requiring prior authorizations or refusing medications without the patient trying a generic med first.

This is why the CF Foundation set up this meeting in Texas.  They want to Medicaid to really understand the impact their decisions may have on our CF community.

CF is a very expensive disease.  But, we explained, CF is can be less expensive if we can catch bacteria before they colonize in a patient's lungs or if we can give medications quickly, before it becomes a lung exacerbation.

Our group, which included a Cystic Fibrosis Foundation representative, a Texas lobbyist who works on behalf of the Foundation (who does things like provides local and state contacts and serves as an local expert on state health laws, issues, etc.), a CF doctor, a social worker, and nurse coordinator from Texas Children's Hospital in Houston, a CF doctor from Dell Children's Hospital in Austin, a CF doctor from San Antonio and myself.

For about an hour, we explained the disease, shared why patients require so much medical care and walked through the kinds of challenges patients run into in an effort to keep themselves out of the hospital.

At one point, I was briefly given the floor to explain what Bennett goes through each day.  It was an empowering moment - to tell my story to someone who can help.

I shared about Bennett's struggles from birth and interspersed it with his daily life and care. The room was quite.  I could tell that people were intrigued.  While I shared, I no longer saw each person as a position of power, but, instead, a mom, a dad, grandfather.  The interest, surprise and concern on their faces made them real.  And I hoped that my son's story also too made CF real.  One official waited until I finished and then she asked, "how old is he again?"  I answered: five.  There was a pregnant pause.  It's hard for anyone to hear how much a five year old has to go through, and that's when he's well.

I don't know what, yet, will come from our meeting.  But, I know, on a whole, our group all felt very heard.  There was a desire from Medicaid to add more CF Centers in parts of Texas that do not have them.  I was very glad to hear such a genuine concern for patients who don't have reasonable access to a CF Center in their area (in some parts of Texas, families much drive 6 hours or even fly) to get care - and that care can require monthly doctor visits.

This interest from Medicaid to add more CF Centers prompted a discussion on what actually goes in to a CF Center.  One CF doctor explained that the CF Foundation accredits CF Care Centers and requires more than 50 patients, a CF doc who specializes in CF, a dietitian and respiratory therapist.  Also, the Center must have a lab who can provide necessary CF lab work and provide sweat tests for official diagnosis.  At the time, I had not realized just how much goes in to making a CFF-accredited CF Clinic.

And then, we talked briefly about reimbursements for doctors.  I did not realize how little reimbursement CF doctors get and how much support they must receive from the CF Clinic's hospital in order to serve their CF patients.  Several times, I heard a CF doctor explain, "I don't do it for the money, I do it because I love it."

After our meeting, we had lunch before everyone hit the road to headed back home.  I made sure to thank the CF clinicians and tell them, oh behalf of all of us CF families: we are incredibly grateful for them.  I feel this way about the Foundation, as well - which is not an entity, really.  The CF Foundation is a group of people who get paid to support families with those with CF.