Week 297: Off the hook

Serious question: have anyone else's kids completely lost their minds this past week? I don't know if it's the gradually warming temperatures, the random late-April snow, the lengthening days, or what, but these people have gone completely around the bend. Lime is quite a bit feistier than usual, protesting various things, demanding things, or insisting that things are wrong with the things he has, etc. Lemon, meanwhile, has a particularly severe case of whatever this spring madness is. His

normally low tolerance for frustration has evaporated completely, so things are getting thrown around the room at the slightest provocation, often accompanied by various forms of yelling or roaring. The highlight of all of this was perhaps Sunday at mid-day. Since I don't want the various forces of the internet to flag this post, let's just say the incident involved the living room floor and a rather large quantity of a liquid bodily waste product, which was expelled at such a trajectory that Lime required a bath and a complete change of clothes. 

Usually when Lemon goes through these little phases of, shall we say, increased volatility, it means that he is working on some new developmental milestone. I am just hoping that whatever this milestone is, it can be achieved quickly, before we have to resort to desperate measures such as having him live in the backyard.

Other than the various and sundry behavioral manifestations of spring, things have been going relatively well. Lemon is still not at what I would consider his respiratory baseline, although I think that is because we made a seamless transition from the last cold of the winter to the first allergies of spring. We brought out the air purifiers over the weekend, and we may restart allergy medication later this week if things get any worse. In light of him still not being quite where I want, we still have not gotten blood drawn for his liver labs. Honestly at this point I may just concede that we're not doing a separate blood draw and just wait until the big lab draw at our clinic visit in June. I don't know that two sets of labs 6 weeks apart will really add anything to clinical interpretation over just the one set in June, and if it's not going to add anything I really don't feel the need to put him through the trauma of an extra lab visit.

I guess I ended up taking a break from my series on the CF Foundation this week, but that doesn't mean I need to take a break from thanking everyone who has donated to our Great Strides team so far, and offer a friendly reminder to those of you who have been meaning to wander over to our fundraising page but haven't made it yet that you can get there by clicking right here!

Week 296: Capitol

This past week, I went back to the state capitol here in Madison to advocate on behalf of CF patients. The advocacy day got started on Tuesday night with a dinner for the advocates. There were about 20 or so of us all told. I would say about half were people who were at the advocacy day last year, and about half were new faces, including a high school student who came of her own volition to advocate on behalf of one of her best friends, which was really inspiring. We advocates were divided into groups of 3 or 4 and then practiced our spiel for the next day. My group was awesome, it included the director of the adult CF center here, the executive director of the Wisconsin chapter of the CF Foundation, and a woman who is heavily involved in organizing advocacy efforts for the CF Foundation.

On Wednesday morning, we met up near the capitol and then headed into our meetings. Our group met with three legislators this year: Senator Jen Shilling, who is the senate minority leader; a staff member from the office of Senator Scott Fitzgerald, who is the senate majority leader; and Representative Chris Taylor. With each legislator, we went through the basic stats on CF in Wisconsin: about 680 patients treated at 7 accredited CF centers across the state, with about $6M in funding for research and the care centers flowing from the CF Foundation into the state over the last 5 years. We also talked about how 38% of children and 20% of adults with CF in Wisconsin rely on Medicaid for access to healthcare.

This lead directly into our main policy ask, which is for Wisconsin to fully expand Medicaid to everyone earning up to 138% of the federal poverty level. Of course, this is a very partisan issue, so the two Democrats that we met with were 100% in favor of doing the expansion, whereas the Republican was not in favor of it (or at least said the caucus doesn't support it). We also asked for continued funding for the Wisconsin Chronic Disease Program, which is a payer of last resort for people with CF and other severe chronic diseases. Fortunately, this program is not considered partisan or controversial, so all the legislators we met with were in favor of keeping it going. The budget process in Wisconsin is going to be quite a mess this year, with the governor being a Democrat and both houses of the state legislator being controlled by Republicans, so it's good to know that at least funding for this one program should continue regardless of what happens with the rest of the budget.

Overall I think our group delivered a strong message, since we represented many different perspectives on CF, and my only real disappointment with the day is that we didn't have more meetings--we were done at about mid-day, and I would have been happy to stick around to do a few more (I think last year I did 5 or 6). We had a chance to sit in on a hearing on a bill about step therapy (basically the concept that an insurer can require a patient to try and fail a less expensive therapy before covering a more expensive one). A lot of other organizations were there giving testimony in support of the bill, which would help patients with chronic diseases to bypass the step process and access medications that will help them more quickly without having to "fail" at other therapies first. I felt like it was too bad that our advocacy day wasn't organized to give us an opportunity to testify at the hearing, especially because the doctor who is the head of the adult CF program had just been telling us at dinner how this is an issue that affects more and more of his patients. So, although overall I felt like our advocacy day was a success, we could easily have done more and I'm hopeful that next year will be even more impactful.

Thank you so much to everyone who has already donated to our Great Strides team so far this year--we are truly humbled by your generosity. We are about half way to our team goal of $7500. If you have been meaning to donate but haven't yet, just head on over to our fundraising page and make a quick donation. Every dollar helps ensure more tomorrows for Lemon and everyone else with CF. Let's make it stand for "Cure Found."

Week 295: Compass

This week, I'm continuing with the theme of cool stuff the CF Foundation does in addition to research, in the hopes that it will inspire you to head on over to our Great Strides fundraising page (right here!) and make a donation. Thanks so much to those of you who have already done so--I hope you're enjoying learning about all the worthy causes your dollars are supporting.












A big challenges all families with CF face is dealing with accessing care through their health insurance or other programs. CF care is complicated and expensive. All CF families spend an inordinate amount of time thinking about their insurance, trying to figure out what is covered and what is not, or trying to decipher the cryptic bills or statements of services rendered that we get constantly from all the different care providers. Then there's the prescription drug coverage, the pharmacy, the copay cards, the home health pharmacy, the requirements for different federal or state assistance programs, and on and on.








To help CF patients and their families deal with all these issues, the CF Foundation offers a service called Compass that includes free, confidential assistance from a case worker specialized in the issues CF families face. Compass provides assistance with legal, financial, and insurance issues, among others. For example, Compass can help families appeal denied insurance claims, or obtain prior authorization for a specific procedure or medication. Compass can also help families navigate financial resources that can lower the cost of medications, and provide support for applying for programs such as Social Security and disability benefits. They also offer services to support any major life transition you can think of, since every one of these transitions can be impacted by CF--going away to college, getting married, having children, the logistics of a lung transplant, and on and on.

The CF Foundation offers these services because CF families know that handling the day-to-day medical needs of someone with CF is just one part of managing life with CF. A disease like CF affects almost every aspect of daily living in some way, and help managing the logistics can alleviate stress and worry, and can free up time for other things. Like living.

So, please consider heading over to our fundraising page (still right here!) and chipping in to help support this program and all the other amazing things the CF Foundation is doing. Thank you as always for your support!

Week 294: Another reason

Spring is finally springing in earnest here in Wisconsin (well, it's supposed to snow on Wednesday but I'm not dwelling on that). Things are greening up, some flowers are appearing. The garlic that Lemon and I planted last fall has begun to sprout. Lemon (and Lime and I) are all still struggling to kick the last dregs of a spring cold, but I think we're all through the worst of it. It is even possible, although I am not in the business of making predictions or plans, that he will be feeling well enough on Friday (when school lets out early for unknown reasons) to finally have that blood draw we've been thinking about for months.  Fingers crossed.

This week, I'm going to continue in the fundraising spirit by telling you about another thing that the CF Foundation does that is worthy of your support: advocacy. The CF Foundation is heavily involved in advocating with local and national lawmakers about issues critical to the CF community. You may be aware that healthcare is a topic of constant debate in the US, and that decisions made by state and federal lawmakers can dramatically impact the ability of people with diseases like CF to access the care they need. The CF Foundation advocates relentlessly to preserve programs like Medicare and Medicaid which are critical supports to many in the CF community. In fact, 1/3 of adults and 1/2 of children with CF rely on Medicaid, and the CF Foundation continues to work to maintain and expand the services offered by Medicaid programs.

While the CF Foundation does support a lot of research directly, one of the biggest sponsors of CF research is still the federal government, through agencies like the National Institutes of Health. The Foundation therefore advocates for continued support for the NIH, and for programs that will advance CF research. The CF Foundation also advocates for policies at the Food and Drug Administration that will allow new, effective medications for CF to come to market as quickly as possible.

Especially in our current circumstance of not knowing what laws will govern access to healthcare in the future, this type of advocacy work is critical to ensure that people with CF can have access to the care they need to survive. As many of you may remember, about a year ago I went to the Wisconsin state capitol with a group of representatives from the local CF Foundation chapter, to meet state legislators and to advocate for some CF-related agenda items. During that visit, I could clearly see how much groundwork was required, even just to have a dozen people go to the capitol of a medium sized state for a day. Someone had to develop our agenda and talking points,schedule all the meetings with the legislators, and figure out who should go to which meetings. There is no way our visit could have happened at all, or been nearly as impactful, without the groundwork laid by the CF Foundation at the state and local level. I'm pleased to announce that next Wednesday, April 17, I'll be heading back to the state capitol again for another round of advocacy meetings.

So, how about chipping in to help support this important work? You can get to our fundraising page by clicking right here! Thank you so much for your support!

Week 293: Spring Break

We had a great spring break, featuring a nice visit with Grandma and Grandpa. We mainly just hung around the house, doing all the usual fun things--reading, coloring, playing with cars, and gallivanting around in the newly hospitable outdoors. I did not quite manage to get Lemon to the hospital to have his blood drawn, mainly because we were having too much fun and it seemed a shame to spoil part of a day with that kind of errand. And of course, by the end of the week, when I would have considered it, he suddenly started coughing a lot, which meant it wouldn't be a good time to draw blood anyhow. I still don't know exactly what that was, but it appears to have been intense but brief, in that whatever it is seems to be waning. We are not yet back to baseline, but quite a bit closer than we were on Friday or Saturday.

The arrival of spring means that Great Strides fundraising season is once again upon us. All of you have been so generous in your support of the CF Foundation in years past, and I hope we can count on your support again this year. As we count down to our Great Strides Walk (Saturday May 18 here in Madison, who's joining us?!?!), I thought I would share with you a few of the important things that the CF Foundation is working on that would benefit from your support.

Today, let's talk about the Infection Research Initiative--you can read more about it on the CF Foundation website here. In October, the CF Foundation announced plans to spend $100 million over the next 5 years on a comprehensive research program dedicated to understanding lung infections in CF, and finding better ways to treat them. Infections are the number one reason for lung function decline in people with CF. We urgently need better ways to quickly identify the organisms that are responsible for infections, and we need to understand the best ways to use antibiotics, antifungals, and other medications in order to eradicate an infection once it starts. These are issues that are very personal to our family, and have been a source of frustration and concern since Lemon was born. We always want to know what is causing his respiratory symptoms. We always want to use an antibiotic in the most prudent way--only when it is necessary, only when it will do some good, and only as much as we need to use to cure the infection but not more.

With the current state-of-the-art, we are still flying blind on all these points. When he gets sick, our metric for whether to start an antibiotic treatment is to consider whether, in our opinion, he seems sick enough that we should try it. Our approach for deciding which antibiotic to use is "whichever one seemed to work last time." We decide how long to treat by seeing how long it takes him to get back towards respiratory baseline, and then continue treating until we reach 10, 14, or 21 days of treatment, whichever comes soonest. It's hardly a rational or scientific approach, and we never know what it is that we're trying to kill. We have been lucky that this approach has kept us out of the hospital for the past couple of years, but it is virtually assured that our luck will run out at some point. Which is why we need to do more research so that we can stop relying on luck and guesswork, and actually have a scientific basis for our treatment decisions.

I hope that the Infection Research Initiative sounds as exciting to you as it does to me. If it does, please consider heading on over to our team fundraising page (just click right here!) and making a donation of whatever size suits you--this is a team effort and every dollar will help in the quest to give Lemon and his fellow CFer's long, healthy, happy lives. Thank you!