Monday, April 11, 2016

In a networked world, value comes from who you are connected to, how you are connected, and the ability to share and contribute

 "I am of the opinion that my life belongs to the whole community and as long as I live, it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work, the more I live." - George Bernard Shaw. 

I'm halfway home from the ImproveCareNow Spring Community Conference as I start this post and I had an incredible experience. As quick background, ImproveCareNow (ICN) is a Learning Health Network for people living with Crohns & Colitis. They were the original C3N, a collaborative chronic care network, designed by patients and clinicians and researchers dreaming about a new and better system of care for people living with these inflammatory bowel diseases. Started in 2007, their community has grown to 86 centers across the US & Europe who collect and share outcome data, collaborate on improvement projects to identify better ways to deliver quality care, and have ultimately and most admirably improved the remission rate among people attending their care centers to 80%.  Eighty percent of people who attend an ImproveCareNow Center are in clinical remission, giving them back their autonomy, the ability to live their life according to their own priorities.

One of the many reason that this network is so fascinating to me is that we are in the midst of trying to create a similar model for success in the CF community. We are dreaming of ways to use the knowledge of everyone to learn what we don't know, share information, and transform outcomes. The success in ICN can be attributed to a number of factors - an enhanced data registry where clinical and patient reported data is entered in once generating real time insights, patient data that is never more than 3 days old, for both patients & providers to partner in decision making; this registry also servers as a population management tool, generating insights about the overall health of patients at a given care center or across a group of care centers, providing the opportunity for learning and improvement throughout the network; a "commons" called The Exchange, which is a sharing site, similar to Pinterest, where patients and providers or quality improvement specialists or researchers or anyone associated with the network can go to find answers to the questions they have and share what they're learning in their life or work - everything from videos on how to swallow pills or drop an NG tube to infection control guidelines, clinical trial recruitment and center or network level improvement efforts.

The remarkable thing about this network, something that has grown and matured greatly over the past 9 years, is the respect that the patient/parent partners and the clinicians have for one another. They have working groups and learning labs where they collaborate both within and across stakeholder groups, respecting the strengths that each bring to the table. They hang out and talk like old friends, the way relationships should be in healthcare. Within the ImproveCareNow network, there has been an increased effort to grow empathy as a means to improving care. Several care teams have recently taken what has been named the "Enteral Nutrition Challenge", an exercise imagined by a person with IBD, where clinicians spend 5 days on a liquid only diet to experience what life as a patient with Crohn's disease might go through, drinking Boost or Ensure for nutrition, dropping their own NG tube, trying to walk a mile in the shoes of the people that they care for. I talked with a doctor and a nurse practitioner from the ICN Center at Cincinnati Childrens at breakfast one morning about their experience. It was incredible to hear about all that they learned, and the dedication that they had to participating in this to better understand the complexities of living this way when they are talking with a patient and helping them to make hard choices about their health and disease.

I participated in a similar empathy exercise called CF 1 Day several months ago and have been dreaming about ways to spread it throughout the CF community. When I arrived at the ICN Conference, I found out about a 24hr liquid only challenge, similar to the Enteral Nutrition Challenge, and I immediately signed up. I was hoping for an immersive experience going to this conference, and I had no idea that I would actually get to go this far in. Names were collected for anyone willing to try this out, and the night before the conference started I received a text message that said that I had won the lottery and was one of five chosen to participate in the 24hr liquid only challenge. I was initially surprised at the way they had positioned it as winning the lottery to participate rather than losing the privilege to eat solid food, but little did I know just how much I would be gaining. I've tried to capture my thoughts about my experience in this Storify.



So what does all of this mean for CF? For starters, we're not starting at square one. ImproveCareNow and NPCQIC and SPS, all learning networks that have been developing and learning over the past many years have started to lay the tracks for us to ride upon. We can learn from what they have done and are doing, and model ourselves off of their success. We know what kinds of tools have the most substantial impact on patient health and we can learn how these tools can be implemented. We can invite them to share more about the path they took to get to where they are, how they build relationships, grew trust, struggled with transparency. We can partner with them to learn across diseases, and we will, about how things like social support, pre-visit planning and transition tools have no boundaries. We will stop wasting the precious time that we have in CF on solutions that have little impact, and focus our efforts on learning quality improvement and collaboration to transform outcomes.

I don't know if we have an "official" launch date for our network of if we are already in the midst of it, though I think the latter. We spent the past 2 years designing our future out of our very imaginations. We will begin recruitment of 15-30 care centers in the next couple of weeks so that we can learn to work together on a small scale before we grow at a rate that only a community with the infrastructure that the CF Community has could grow at. We will challenge the status quo for the sake of our health and the health of our children. We will transform CF care and extend the length and improve the quality of life for all people living with CF. We can't do it alone. We need you, each and every one of you, to believe in us, to support us, to join us or to lead us.

I'll end with a quote that sums up where I believe we are right now in healthcare. It's from one of my all time favorite books, Being Mortal by Dr. Atul Gawande: "We are caught in a transitional phase. However miserable the old system has been, we are all experts in it. We know the dance moves. You agree to be the patient, and I, the doctor, agree to fix you, whatever the improbability, the misery, the damage or the cost. This new way in which together we try to preserve the fiber of a meaningful life - the loyalty and the individuality - we are plotting novices. We are going through a societal learning curve, one person at a time, as a patient and doctor, as human beings." We are all learning, and we each need to bring what we have to the table in order to learn what it is that we really need, and then use our experiences and our imagination to create it.

Monday, March 14, 2016

Year SIX starts today!

My favorite duo turns SIX today!! I don't feel old enough (or responsible enough) to be in charge of two 6 year olds, but that's where we are. We've made it this far, and I hope I live to see 60 more. In another stoke of genius, we are having the entire kindergarten class over on Friday night for a birthday party. Donations of wine are now being accepted.

For the first 5 years of Drew's life, we were in the hospital, on average, twice per year. The first year may have been the hardest in terms of admissions, and every year since then we could count on an infection or a flair of symptoms every 4-6 months on average. Ladies and gentlemen, it has been ONE YEAR since the great health fiasco of 2015. We have been one whole year IV and hospital admission free. We haven't even been on oral antibiotics since his birthday last year. I don't think its one thing that helped him, but rather a combination of things. I'm sort of obsessed with his doctor and her willingness to listen to us and work with us to try different things. She definitely plays a huge role here. Another thing we've done is add the Aerobika, an airway clearance device that you blow in to and it vibrates to loosen the mucus in your lungs, but even more, it causes a positive expiratory pressure which opens up his floppy airways and helps him to cough out the gunk way better than the vest or CPT was ever doing for us. In the past year I also started taking him to a chiropractor once a month at the recommendation of another adult with CF who saw tremendous benefit to going. I think its helping with his rib cage mobility, keeping him aligned and loose and able to keep his rib cage flexible so that those little lungs can expand as big as we need them to. He learned to do sinus rinses and does them daily if not twice daily, swims every week at least once and started Kindergarten. He's on n-acetylcysteine (Mucomyst) and takes it orally as much as we can sneak it into a lemon-lime gatorade. We cut down on airway clearance from 3 to 2 times a day when we were treating a fungus earlier this year and he was being pushed to his limit with medications and treatments, and he got his own iPod.

I think a combination of all of these things has left him in good health and relatively good spirits. I also don't underestimate the role that friendship has played in his good health. Isn't there some saying that goes "Healthy mind, healthy body"? If not, I'll go ahead and author that, because I believe that the connections that he has made to some friends in his class and on his basketball team make him feel like he is a part of something, encouraging him, even if subliminally, to stay well so that he can continue to be a part of that. We had previously turned down play dates to get in breathing treatments and now we work around them. He gets everything he needs, medically speaking, but the social support of friendship was a previously undervalued component of his health. We've also expanded his freedom to make some choices on his own. I talked about this a little in another post, but we realized and appreciate that he needs to be permitted, in as much as possible, to keep shaping the story of his like in the world; to make choices and sustain connections to others according to his own priorities. We schedule his doctors appointments on days off of school and work in tests that need to be done after school and on the weekend. I don't know what parts of what we are doing are helping the most but we don't feel a strong need to make any changes at this point!

I just returned from a week in DC at a Center for Education and Research on Therapeutics (CERT) meeting about Precision Medicine followed by the annual Cystic Fibrosis Foundation Volunteer Leadership Conference. It was great to see so many new faces in attendance at VLC this year, and sad to see some old friends missing. I, myself, wasn't actually invited to attend this year, but the camaraderie that I find that these gatherings of hundreds of CF parents who are traveling the same path in life helps to carry me through for another year, and so I registered and attended on my own. I was a little disappointed that there wasn't more time to hear from Preston and Mike Boyle and Bill Skach on the state of the science. In years past, it felt like we would get a pretty thorough briefing, and this year felt like we had barely scratched the surface before we were out of time. I did learn that the CFF is planning to play a larger role in lung transplant, working both scientifically to determine why lung transplant survival rates are significantly lower than some other organs, and also with families through the process, though the details of both were a bit vague. I'm hoping we will be learning more soon. Kathy Sabadosa gave an amazing presentation on the CF Care Model of the Future, the C3N work that I've been involved with for the past several years. We are in the weeds of creating the pilot learning network, the group of 15-30 CF care centers that will start working together, being truly transparent with their data, and learning with one another to improve not just the clinical metrics like lung function and BMI, but things that are important to patients and families like quality of life and access to quality "best in class" care. We have a monthly newsletter that we have started to push out to folks who have been involved with the project, wish to learn about the work, or hope to get involved. While its still a bit technical, you are welcome to check it out and subscribe to follow our progress - http://eepurl.com/bTnhbz.

Hands down, the best part of VLC this year was hearing one of the co-founders of the CFF, Phyllis Kossoff, share with us her journey through this life. She was and continues to be a powerhouse, doing what needs to be done with others in the CF community. She touched the hearts of everyone in that room, and her "We WILL do this" attitude empowered us to keep going. I'm always grateful for the opportunity to meet amazing people who are doing amazing things!


Friday, January 29, 2016

#hellomynameis

If you're not familiar with the campaign #HelloMyNameIs, you should definitely check it out. The simple, "one liner" explanation of this movement is this: #HelloMyNameIs is a campaign for more compassionate care. It was started by a woman named Kate Granger who, while spending time in the hospital made the observation that she often didn't know the names of the folks who were caring for her. She started this campaign to remind the staff about the importance of introductions.

In a conversation with a friend yesterday about the experiences of a recent hospital stay, we were reflecting on the infection protection protocols for caring for people with cystic fibrosis. Before anyone enters the room of a person with CF, regardless of whether it's a room in a hospital or an outpatient room for a regular well visit to CF clinic, the recommendation from the CFF and typical implementation is that they put a gown over their clothes, put gloves on their hands, and add a mask to their face. This is a picture of nobody that I know taken from Google images that represents pretty well what everyone that we see when we go to the doctor or hospital looks like, perhaps minus the cap on the head:


The nurse who takes our vitals is dressed like this. The child life specialist who offers toys and welcomed distractions is dressed like this. The folks who place a PICC line are dressed like this. The nurse or VATs team who shows up to replace the IVs that blow, sometimes multiple times a day, dress like this. Other people who dress in this garb include the doctor, the resident, the fellows, the respiratory therapists, the dieticians, the social workers, the GI docs or ENTs, the cleaning staff, the folks who deliver our meals, everyone who enters our room comes in dressed this way. Name badges, something worn by everyone who works in our hospital, are hidden beneath all of the armor worn by all of the folks caring for us, in any capacity, designed to protect us from infection.

So lets imagine for a moment the trauma that a 5yo endures needing to be restrained to replace a blown IV line. Or the frustration they might feel being woken up for a blood draw at 2 am after having just fallen asleep. When we've spent 3 hours in clinic for a well visit and we've received our after visit summary, ready to go, and then someone new shows up for a "quick culture" or a "short survey", there's frustration felt, especially so when we don't know who they are. When everyone who enters our room looks nearly identical, there is unnecessary fear, anxiety and frustration raised when a nice gentleman coming to deliver a meal is mistaken for someone who might be there for another IV replacement.

What if we added one more piece of armor to the garb, a simple name badge that said "Hello! My name is..." and maybe even their responsibility, the way they're feeling, or their favorite thing to do on the weekend? What if my nurse walked into our room for a clinic visit with a badge that said Hello, my name is Susie and I like warm hugs? I know my kid would be thinking about Olaf and not the fact that shes about to gag him with a culture swab jammed down his throat. Or the food delivery gentleman, "Hello, my name is Sam and the pizza here is my favorite." I think this could go a long way. Whose willing to try it? I'm offering free "Hello! My Name Is..." to the first clinic to test this out.

Or maybe we should think about doing this in reverse, starting with patients! What if we all started wearing these name tags, patients and parents, giving our care teams a glimpse behind the title of patient. What if our kids could make their own, maybe even drawing a picture of how their feeling, starting to share their own narrative, in their own way?

"Hello! My name is Erin and I'm the mom of 4 little kids. I like to read books and connect with like-minded folks on social media. I'm scared about this upcoming visit and what we might learn that could change our life in so many ways." Let's bring #hellomynameis across the ocean in a real and meaningful way. Whose with me?

Tuesday, January 26, 2016

There's Never Time Later

I'm sure that some of you have been following along with my dear friend Breck's current situation with her son . She's got understanding from the rest of the CF community who lives through these same trials and tribulations every day, and shes got empathy and compassion from just about everyone else that I can imagine as she handles this situation with courage and grace, and shares about it bravely. I love her dearly, and I'm pissed off.

For those of us living with chronic illness, there is never time later. The frustrations of the current healthcare system, the shortcomings that we are just left to wade through on little sleep and high emotion, aren't getting fixed because when we are in the midst of them, our short term goal is to simply get through it. We do it the best way we know how, fighting the fights that we can, using what energy we have, and we swear that when we make it through this something is gonna change. The reality is that we are never through it. We go from one situation into the next into the next. There is never a period of time where our spirit and soul can handle fighting so hard for what we want changed while we carry the weight of the illness and the situation at hand. But it must! It must change.

There are guidelines from the CFF that are saving lives, infection protection guidelines that are recommended, based on science, evidence, proof, that their implementation will help to halt the spread of infection, yet I regularly read of discrepancy of implementation of these guidelines, hearing from friends and relatives who work within the CF community that institutions don't or aren't able to implement the guidelines for numerous reason. Health literacy is so low for so many people, and what they don't know is killing them. How can they insist that CFF guidelines be followed when they don't even know or understand them themselves? When we blindly trust our care teams, that they are doing all that they can for us, we also have to realize that sometimes  we need more than they have. We parents, patients, we need to play an active role in understanding and managing our health and care.

This isn't just related to infection control. Some centers do cultures every visit, some do them twice a year. Some reuse nebs on the inpatient units, rinsing with sterile water after each use (which sort of blows my mind that anyone thinks this "cleans" a dirty neb?) while others use a new neb for every treatment. There is discrepancy in the order medications should be taken, the air pressure that the nebulizer should be set to, the recommendations on enzyme brand or dosing, when you should opt for a PICC line over an IV and who gets to decide how many times the kid should pricked before a change is needed. Some centers offer patients help with organization of co-pay assistance programs while others are only fortunate enough to learn about them if they stumble upon the information on Facebook. Even when we do figure out what's "best", or even whats best for us, then we have to see if our insurance company agrees. This isn't just in CF care, it is happening in chronic illness across the board and its simply unacceptable. Then armed with the experiences of dealing with these insurers and these drug companies and knowing what trouble one will have to go to in order to have a certain care regimen approved or denied, patients are only being given the easy option, because no one has the time to fight, to figure out how to navigate the appeal process after one received a decline. And even if someone does it and shares it there is no guarantee that it will work for the next guy. But we share anyway, fighting as hard as we can with all that we've got.

In a conversation with my dear friend about this surgery her son is going through, we started to reflect on how little we actually know. And not like me and her "we", like the whole community. We are guessing so much, trying new things based primarily on the advice and expertise of our doctors and care teams, patched together with what we may have seen Facebook or read on some blog. This is how we are running this game. We are trying to figure out what works for us, personalized and precision medicine, but I know that precision medicine isn't going to work beyond me if there isn't a way to capture and organize this learning. How can my experiences make it less shitty for the next guy? What order of medications, or infection control protocols are going to give me the best shot? If the health literate, like us, like folks in other chronic illness categories are having this hard of a time navigating the system, it feels hopeless for everyone else.

How do we change this? The weaker man is the only one compelled to fight like this, who sees the things that need to change, the things that really need to change, firsthand. We are exhausted, and desperate, yet hopeful. We appreciate the efforts of those trying to help, but we've gotta figure out a better way to help you help us with what we really need.

I described to my friend last night how looking at her situation has given me a little perspective. I finally feel like i'm on the outside of the snow globe looking in. I think of this life a little like a snow globe. Its pretty and peaceful, but not much ever changes. We are trapped inside of this thing called chronic illness, and while its changed our lives in unimaginable ways, both good and bad, we can't get out. Every once in a while something shakes us up and it takes a while for us to simmer back down to our peace. It feels like a dream sometimes, but waking up just takes you right back to more of the same. Its the same routine, usually plus a few every couple weeks or months or years, never less. Its exhausting to think about it, much less live it. And there's never time later. What can we do today, right now, to change that?

Friday, January 8, 2016

People Power

There's a fascinating article that I was digging into earlier today that was published near the end of the year 2000 called "Healthcare in a land called PeoplePower: nothing about me without me." First of all, how I've never read this before is a mystery to me. It's about a new and perfect system for healthcare for a mythical republic called PeoplePower that was dreamed up by a group of folks from varying backgrounds with their guiding principle being "Nothing about me without me." Amen I say to that!

The ideas that were expressed in this paper, which I highly recommend you go read - heres the link again  - were the groundwork laid 16 years ago for where we are today in healthcare and where we still need to get to. Some of the highlights:

  • computer-based guidance and communication systems; 
  • patients and clinicians depend heavily on secure electronic mail for communication and a growing number of technologies help patients monitor symptoms and signs in the home;
  • the Internet-based patient record exists as a single version that resides nowhere but is available everywhere; 
  • patients have nearly complete access to their medical record (although they don't have to review their record if they don't want to), but they also write in it, elaborating, tracking and explicating problems, correcting mistakes, prioritizing needs, and at times suggesting both diagnoses and treatment plans; 
  • shared decision-making as a national standard for clinical interaction; 
  • data donation with opportunities to aggregate data, establishing a `virtual' national laboratory that houses standardized, core measures of the processes and outcomes of care to allow for the conduction of evidence-based, epidemiological research that informs and improves care; 
  • a constant stream of feedback, both through surveys designed to provide aggregate data and by inviting individual anecdotes; 
  • patients join in a wide variety of hospital eff€orts, ranging from ad hoc work teams developing new initiatives, to the array of committees overseeing diff€erent hospital functions;
  • those who legislate, regulate and pay for health care work closely with patient advocacy councils and include lay representatives on their principal committees, working groups, review boards and consensus panels; 
  • a level of service that delights and surprises both the `caregiver' and `caregetter' with unanticipated levels of excellence.
Can you imagine if we had these things, like all of these things, in place and working smoothly today? I, for one, wouldn't have a kink in my neck from the stress of the past week trying to navigate the mess that is new insurance. What do we need to do to get from where we are to where we need to be? How can we expedite things? How do we achieve this, something that was written about in just exquisite detail, capturing exactly what we needed, then, and still now? 

My experiences over the past several days and years leave me frustrated and scratching my head, trying so hard to identify where the system breaks down. There are so many moving parts, and there as so many good people doing some many good things with very little, if any, insight into whats happening with every other component. A drug company may design a great patient co-pay assistance program, but if the patients insurance won't allow the patient to obtain a brand name version of the prescription, something required of the co-pay program, understandably, then there is no benefit to the patient after all. Many people with chronic conditions carry more than one insurance, with the secondary often being a form of government support. That support is rendered useless when your primary insurer requires that you receive a 90-day supply of your medications but your secondary insurer will only support whats not covered on a 30-day supply. 

Everyone seems to be doing really well at whatever it is they are doing, but we haven't quite yet figured out how to all work together - the clinicians and the patients and the policy makers and insurers and drug manufacturers. We meet in groups maybe sometimes, but it is rare that we are often all together, working together for the greater good. No doubt work is constantly being done for the greater good, its just not happening all together, its happening in silos. The value to breaking down those silos of excellence, connecting them into a circle of excellence, to all of us, is huge; to really take a leap and achieve something new, really different and better and transformational. I think its under appreciated how much everyone would benefit from this collaboration. 

Its often not until a unique perspective is added that you have the opportunity to see something differently. Someone I work with and greatly admire often uses the analogy of the high jump, and how for the longest time, the record stood at something around 8ft. For many years. humans simply couldn't jump higher. Until, someone looked at things differently, introduced a new mechanism, and the pole vault took humans to more than 20ft in the air. 

This healthcare thing seems an impossible task to repair - everyone with their own expert opinion on why its not working the way it should and whose fault is what - but its exactly what we are doing with our C3N work. Rather than designing components of a system, or perhaps even fantastic micro systems functioning completely independent of one another, we believe we can achieve better health and care by bringing all of the parts together. We started with an exercise quite similar to what was done at the Salzburg Seminar where PeoplePower was dreamed into mythical existence. We brought the patients and the clinicians and the researchers and the social scientists and the artists and the reporters and the policy makers and the administrators and the advocates and anyone who touches the system for CF care, we brought them together to dream about what our perfect system would look like, and at that time, we too, left feasibility (at least tried to) at the door. We had to imagine it first before we could dream it right into existence. And once we had that framework we started to get to work, trying to figure out more specifics, identifying barriers to creation or implementation of some of the things we had come up with. We split into groups and worked with others inside of the community who shared our passion, and we would then converge again as a whole to see how our parts fit together, how our system could work. We thought about how we would measure success, and we started to test and prototype some of what we were learning. We realized and appreciated that this wasn't going to be something that we create and then wipe our hands of and carry on happy, but rather a dynamic and forever changing and evolving system that invites and values collaboration and innovation from every single person involved.

That's where we are today. With support from the CFF and more people inside of and outside of the CF community than I can possibly name, we are piloting this work at a handful of CF centers across the country, with the hope to transform the entire CF system over the next 3-5 years (my number, don't hold anyone else to that) to test the impact of some of these different ideas on health and care. The goal? To achieve much of what was dreamed about 16 years ago, what I bullet-ed above. Scroll back up now and take another look. Go read that article, and think about how nice it would be if the system for CF care functioned like it did in the mythical republic of PeoplePower. The success of our transformation is dependent on people power - you and me and everyone who wants to see success, however you define it. Its about all of us working together for the greater good. And I'm all in. 

Wednesday, January 6, 2016

The five trips were worth it, even though I still don't have the medicine

Not much to update since the post about my fifth trip to the pharmacy to pick up our prescription using a new manufacturer copay assistance program. Our dietician has been wonderful, working late trying to help other families realize the benefit of this program and helping us to navigate the obstacles that accompany anything new. She called me this afternoon to let me know where she was with talking to the drug rep and figuring this out, and we talked for a bit about how we might help others to realize the benefits of this and other drug manufacturer programs. I mentioned that we don't typically qualify for patient assistance programs as they are often income based, but we discussed how there seems to be a difference between co-pay assistance programs and financial assistance programs. Give the prevalence of high decuctible insurance plans, many companies are offering these co-pay cards now and they help out tremendously.

After I got off the phone with her I did a little digging and I just have to share what I've accomplished with about 4 phone calls over the past 3 hours, both because i'm excited by and proud of it, but also because I hope someone reading this will be able to do the same! I got co-pay assistance for two more of Drew's medications, Pulmozyme and Tobi, and here's how:

I got aPulmozyme co-pay card quite easily with this link https://www.activatethecard.com/pulmozyme/welcome.html#. I was able to print it out as soon as I filled out the information. The only hiccup was when filling out the information for the card I had to use my name rather than Drew's because someone older than 18 was required to do it. With our insurance (CVS Caremark Specialty) and our new HSA plan, the out of pocket cost of the medication for us would be $2964/mo, and using the co-pay card the cost to me will be $30 and $2934 will be paid by Pulmozyme toward my deductible. This only works with a 30 day supply, not 90, and is good for covering up to $10,000 in a 12mo. period.

Tobi also has a co-pay program for people with high deductible plans and with no government insurance. You have to call them at 877-999-8624. Online it is advertised as being for Tobi Podhaler but they also cover the nebulized solution. They give you a card number on the spot and all the other information you need to give to the pharmacy but do not have a physical card that they send to you or that you can download. You also can only use this on brand name Tobi, not a generic substitution. This also only works on a 30 day supply, but will cover up to $14,000 annually and renews automatically. The cost with our insurance for a month supply of Tobi is a little over $3,000 and with this co-pay card the cost will be $4 and Tobi will pay $3000 toward our deductible. 

So the GREAT news here is that between his Creon, Pulmozyme and Tobi, Drew will meet his deductible when I get the prescriptions filled later this week. This means our families out of pocket expenses have been cut WAY down for his care. The value of doing this first thing in January is that his deductible is met before he has any other medical expenses for us to pay out of pocket. And dare I call it easy? Without the struggle to get the Creon prescription filled, I would never have had the conversation I had with his wonderful dietician to become aware of other manufacturer co-pay programs or explore them to see what the opportunity might be for us. So while it may be the only thing that I accomplished today, it saved us more than $6,000 in prescription expense this month and in doing so lowered the cost for all medical expenses for the rest of the year. The only thing that could have been better is if I still had Better to do it for me. That's another blog post altogether, but the long and short of it is that most people don't have the time or energy to spend half a day digging and calling and calling back and sharing and learning, and a company like Better, something that truly helped to lighten the cognitive load for patients by taking on these important and time consuming tasks could really help the whole healthcare system in a real way. I was so sad to see them go, I just don't think the world realized just how valuable this service is, to patients and ultimately the entire healthcare system. I miss you, Better!