It All Works Together for Good

img_0217Today was one of those days where everything made sense, once again. It was a day filled with non-coincidences (meaning that God was clearly at work because there’s just no way it all randomly happened) that confirmed my calling and purpose.

Today was a vivid reminder of this verse:

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. – Romans 8:28


It all started yesterday, when I spoke at the Capitol for the Newborn Screening Awareness event. After the event, I was speaking with legislative staffers who have helped me every step of the way with moving this bill forward, and I learned that just because our bill passed (unanimously) out of committee last week doesn’t mean that it will go to the floor for a vote.  I was stunned, but not dismayed. I asked what I needed to do to move it forward and they suggested that I go to the offices of the Speaker of the House and the House Majority Leader to speak with them (or their staff) about the bill.

I “just happened” to still have two copies of the lobbying packet I had assembled months ago in my portfolio. Brennan “just happened” to be home with the boys so I had time.

So, my friend, Ashley, and I went to the Speaker of the House’s office and as we were speaking with his secretary, a man came up and was listening. He said he’d love to know more about what we were discussing and it turns out that he is the policy advisor to the Speaker (which means he can get things done!). He was very interested in the bill and in our stories, which was so encouraging.

I followed up with him via email that afternoon, and when he responded he asked if I could come for a meeting TODAY. He said he thought I deserved more than the two minutes we had together to better inform him on the bill and the current status of Newborn Screening in Pennsylvania.

Wow.

So, this morning, he asked if I could come at noon, and I went. I rushed home from MomsConnect, changed clothes, and headed to Harrisburg.

Brennan “just so happened” to be off today (for his birthday) so I didn’t have to take the boys with me, which was a blessing.

The meeting was incredibly insightful and he gave me some “homework” that will make the case for the bill even stronger as we move it forward. He offered such wisdom and practical steps to take, and I am so grateful for those 45 minutes.

He didn’t have to take the time to listen to me, or help me. But, he did.

And it was exhilarating. 

I may not desire to be in politics as a career anymore, but that fire is still within me. I so enjoyed the last two days of actually being able to work to move this bill forward. I love learning more about the process and making progress.

But, most of all, I love seeing the hand of God at work in my life, and seeing how it all fits together. 

  • Almost twenty years ago, I decided that I wanted to be a lobbyist.
  • Eighteen years ago, I interned in Sacramento with a lobbyist.
  • Fourteen years ago, I graduated with a political science degree.
  • Eleven years ago, I moved to PA and worked for a lobbying firm (but wasn’t passionate about the subject matter).
  • Eleven years ago, one of my bosses took the time to mentor me on lobbying and Pennsylvania politics (and still gives advice today).
  • Ten years ago, I decided that I hated politics and didn’t want to lobby.
  • Almost five years ago, Tori was diagnosed with Krabbe, and I learned about the need for someone to fight for NBS in Pennsylvania. I knew this was my calling. There was no denying it.

I pray that you have moments like this, moments where you can look back and with clarity see why God allowed some of the things you have experienced.

I never dreamed twenty years ago that I would someday be lobbying for Newborn Screening in Pennsylvania because my daughter died, but now, I can’t imagine doing anything else. I know that I have had this training, these experiences, to prepare me for this work, and I’m ready to work.

God is so good, and faithful, and sovereign. Always.

H.B. 730 – Time to Take Action

PENNSYLVANIA – it’s time for action!

We’ve been waiting (not so patiently) to be able to tell you that we have important legislation that will be introduced VERY soon, and if it is signed into law (which is likely given the broad support we have) Krabbe will finally be mandatory by default.

Hannah’s Law (Act 148 of 2014) was created to make screening for Krabbe mandatory; however, it has yet to be fully implemented because PA’s NBS system is broken.

This bill will not only fix Pennsylvania’s broken NBS system and ensure that EVERY baby is screened equally (right now your zip code determines what diseases are included on your baby’s NBS panel), but it will fully implement Hannah’s Law at last.

What can you do? If you live in Pennsylvania, you can send a note like the one below (or copy/paste if you want) to request that your legislator CO-SPONSOR the legislation.

It will be called H.B. 730 – in honor of Tori’s birthday ❤ We were so surprised and honored by that!

If you share this post PLEASE make sure our text accompanied it. Otherwise it will just be the link to the memo.

If you want to copy/paste the following, feel free! You can find your representative’s info here: https://www.legis.state.pa.us/cfdocs/legis/home/member_information/contact.cfm?body=H

Dear ___________,

My family and I are residents of your district and wanted to make you aware of a bill in hopes that you would sign on as a co-sponsor.

https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20190&cosponId=28612

It will be numbered H.B. 730, the numbers representing a precious girl’s birthday. Victoria Brackbill passed away from Krabbe Leukodystrophy in March 2016 at 20 months of age. Her life could have been saved had she been screened for Krabbe at birth.

Victoria’s family has been working with the Dept. of Health, Rep. Cruz (who authored Act 148 of 2014), Dr. Levine, and others over the past few years to help them to see the weaknesses in Pennsylvania’s Newborn Screening program, and they have listened. The fight has become about so much more than Krabbe being one of the mandatory screenings in PA – it has become about making the program better and more equal as a whole.

Pennsylvania currently ranks 2nd to LAST in the nation for the number of diseases for which every baby is screened. As you will read in this memo, your zip code determines life or death if you’re born with one of these diseases that can be treated if caught at birth. That is simply unacceptable and we’re seeking to change that.

This isn’t a partisan issue – this is a human issue.

If H.B. 730 is signed into law (which is likely will be as the Governor also supports our efforts), Krabbe will become mandatory by default. More importantly, though, every single baby born in Pennsylvania will be screened for the exact same diseases and have the same chance at life as all the other babies.

Thank you in advance for your consideration, and hopefully your support.

NBS Advisory Board Meeting, August 23, 2016

Today I attended the quarterly meeting of the Newborn Screening Advisory Panel of Pennsylvania as I did in April and will continue to do until Krabbe is on the mandatory screening panel (and maybe even after that, but we’ll see).

You can read about the April meeting – and some background about the purpose of the Advisory Panel – here.

You can read about the meeting with the Physician General in June here.

This meeting was uneventful compared to April and Krabbe wasn’t even on the agenda for discussion. Dr. Levine, the Physician General of Pennsylvania, was in attendance for the beginning of the meeting and her presence seems to have had an effect on the panel given the tone of the discussion. 🙂

Positives:

  • Testing for X-ALD will begin on April 1, 2017 and testing for MPS-I will begin on January 1, 2017. Both of these are lysosomal storage disorders (LSDs) just like Krabbe. There are funding issues being worked out at the moment, but the panel is hopeful that these implementation dates will remain in place.
  • Testing for Pompe has been in place for six months; they have already identified eight positive cases.
  • The panel will be submitting a “Program Revision Request” to fund these two new tests AND will include the future of NBS in the proposal as more diseases (Krabbe?!) will be added in the future.
  • The Department of Health has created a new brochure about Newborn Screening to better educate new moms and dads about what is available in Pennsylvania and how it works. It will be visible on their website in a couple of weeks.
  • The panel is hoping to merge the two panel system that currently exists in Pennsylvania, which would make ALL of the testing mandatory and not optional for each hospital (meaning that all babies would finally be screened equally and your zip code won’t determine life or death!). Currently, only seven diseases are mandated in Pennsylvania; the rest, including Krabbe, are on a “follow-up” panel and each hospital chooses which diseases from that list will be included on their screenings. Ridiculous, I know. Thankfully, they all see that it’s ridiculous, as well.

Since Krabbe wasn’t mentioned in the first half, I made a point to talk to a few specific people during lunch to find out what I wanted to know:

  • According to PerkinElmer – the lab through which all of the testing is done – Hershey Medical Center is STILL the only hospital in the entire state testing every baby for Krabbe and for the other five lysosomal storage disorders (LSDs) in Hannah’s Law (Act 148 of 2014).
  • I verified YET AGAIN that if a mother asks for her child to be screened for Krabbe in a Pennsylvania hospital (or birthing center), the hospital has to do it.
  • PerkinElmer said that only a handful of requests for Krabbe testing have come through, which shows a great need for education until the testing is mandatory.

During the “public comment” section at the end of the meeting, I was able to address the issue of hospitals telling their patients that their babies were being screened for Krabbe automatically, and the panel was genuinely alarmed that this is happening. This launched a discussion about how they can improve the communication and education because it’s a serious problem and is also opening up hospitals (and the state) to law suits.

ONLY Penn State Hershey Medical Center is automatically testing for Krabbe in Pennsylvania, BUT, if you ask your hospital then they have to screen your newborn for Krabbe. Ask to speak to the Newborn Screening Coordinator at the hospital as they should be aware of this. If not, make them aware 😉

We found out that they are going to give the new brochure about NBS to the moms after birth along with everything else they give them, and Ashley (from Rep. Cruz’s office) and I both remarked that there has to be a better time, perhaps during prenatal appointments? Neither of us remember much of anything after our babies were born. That is NOT the time to give the mom a stack of papers, with this brochure included, and expect them to read and make these important screening decisions! The men agreed after we brought it up 🙂

In regards to Krabbe specifically: I asked Dr. Vockley if the conversation he had with Dr. Kurtzberg in July had affected anything (they spoke about her research and she schooled him, basically); he stated that until something is published, nothing will change. We know that Dr. Kurtzberg has submitted data for publishing, so now we just wait. Once that data comes out, it sounds like having Krabbe moved to the Mandatory Panel could happen quickly. Maybe.

Afterward, Rep. Cruz’s staff (Ashley and Rachel) and I spoke with Dr. Vockley for quite a while regarding Krabbe and Newborn Screening, and, overall, he was FAR more positive (and respectful) this time than he was three months ago. I believe that his conversation with Dr. Kurtzberg has shown him that there is MERIT in screening for Krabbe at birth; that the transplants are successful; that it’s WORTH IT.

He mentioned again the lack of data about the success of NBS and transplants for Krabbe; so, I pointed out to him that since only FOUR states are screening, it’s no wonder that we have no data! If you aren’t screening at birth, you aren’t catching it early enough to transplant, therefore, no data. He surprisingly agreed with me. I then added that, since Pennsylvania has such a high rate of leukodystrophies, WE could be the state providing that data and making headway in research. And he agreed with me there, too!

In summary, there have been no changes, no possible implementation dates, BUT, overall the attitude toward NBS screening HAS seemingly changed, and we feel hopeful that it won’t be long before every single baby in Pennsylvania is given a chance at life because of NBS.

If you read all of this, thank you. 🙂 Please spread the word to other Pennsylvanians so that every new mom is aware of the options for Newborn Screening! No matter what state you live in, you can write letters to your legislators HERE and let them know that this is important to you!

September is Krabbe/Leukodystrophy Awareness Month AND Newborn Screening Awareness Month. Let’s do our part to educate!

 

Mother’s Day Surprise

While my dad was still in Pennsylvania with us, I came up with a plan to fly to California for a week over Mother’s Day weekend as a surprise for my mom and grandmothers (and everyone else). Brennan and I had enough miles through United to make the trip practically free and I had the availability, so we booked the trip!

Tuesday morning, bright and early, I boarded a plane in Harrisburg and arrived in San Francisco an hour early (the pilot had a lead foot 😉 ). That was even after Air Traffic Control told them to slow their approach. 🙂

Here are a few photos of the scenery we saw as we flew across the country:

My dad picked me up and we headed north to Red Bluff (a little over three hours).

My mom, a Customer Service Manager at Walmart, was still at work when we arrived. Because I hadn’t yet seen the brand new store that opened the week after Tori went to Heaven, we decided to go to the store to surprise her.

We had hoped to find her rather than have her see us.

Well, the reveal didn’t go exactly as planned because she found my dad first (I was in an aisle shopping) and saw my purse – exactly like hers – in the cart. She asked my dad why he had her purse and he had no answer! 🙂 I came around the corner and saw her there and she was shocked. Needless to say, she had no idea that I was coming.

I’ve been able to spend time with family and a couple of friends thus far, and we have meetings with the staff of my parents’ legislators to discuss Newborn Screening for Krabbe. California has seen legislation for this in the past (as recent as 2012) but has never added Krabbe to their panel. We’re seeking to change that.

It is going to be a great week at “home” and I’m so glad we were able to make this happen.

 

NBS Advisory Board Meeting, April 19, 2016

Yesterday, I (Lesa) had the opportunity to attend the quarterly meeting of Pennsylvania’s Newborn Screening (NBS) Advisory Board. These meetings are open to the public but members of the public apparently rarely attend, as was evidenced by comments made and by the fact that so many came to introduce themselves to us.

This committee was formed to advise the Secretary of Health regarding advancements in NBS and to recommend certain diseases to be added to the mandatory NBS panel. However, they have gained a lot of power and they essentially are the final say now. The Secretary of Health has told them that she will pretty much do whatever they say.

You can see a list of the members here along with their credentials.

It was an informative meeting on many levels, but here are some bullet points of what I feel are the most important points:

  • Dr. Vockley – the chair of the committee – clearly doesn’t think that Krabbe should be part of the NBS program. He made that very obvious in his statements.
  • Penn State Hershey Medical Center is THE ONLY hospital in Pennsylvania screening for all of the diseases in Hannah’s Law (Act 148). They began screening on March 8, 2016. Despite the fact that hospitals are telling parents that they are screening for Krabbe, the Department of Health AND the lab that processes the NBS panels confirmed that only Hershey Medical Center is testing.
  • Dr. Vockley said that he “doesn’t understand” why Hershey is testing for these diseases and wants to know their thought process. Yes, I was pretty upset to hear him say something like that.
    • He seems to be basing his entire opinion on NY’s results from the first five years of testing. One state. He kept going on and on about how “unsuccessful” treatment was, which is why I said what I did in my testimony.
  • The main hospitals in Philadelphia are looking to add the same five diseases from Act 148 to their panels.
  • Pennsylvania’s biggest issue is to resolve how these NBS panels are funded:
    • If the state mandates them (currently 6 diseases are mandated), the state must pay for them as the law is currently written.
    • If the state moves them to the “mandatory follow-up” or supplemental panel, the hospitals absorb the cost. This is why hospitals have the choice to screen or not screen for the 27 diseases on the “follow-up” panel, even though Dr. Vockley continually used the phrase “mandatory follow-up” when describing the panel.
    • They reported that it costs about $80 per baby to screen for all 31 (or so) diseases on both panels. Only $80!
      • Mandated six diseases = $23
      • Pompe (from Act 148) = $10
      • Additional $47 per child if all were mandatory
      • Our thought was that it should just be added to the hospital bill, or split cost with parents. What parent wouldn’t want to pay $80 more to have their children fully screened? Not all could afford it, but those who could would pay.
    • If insurance would help the hospitals with cost, hospitals would be more likely to screen for all.
    • However, it is difficult to mandate insurance coverage because most providers are not based in Pennsylvania. State can’t force them to pay.
    • Bottom line: new legislation needs to be written to change how PA funds these NBS panels because children aren’t being screened equally.
  • The committee admitted that they are not “on par with the rest of the country” with how we operate and fund our NBS program. It is currently a “public/private collaboration” instead of being purely a public health program.
  • Dr. Vockley continued to make comments about other diseases that would apply to Krabbe but he is still opposed to Krabbe being on the NBS panel:
    • “Why do we have to wait for a baby to die before we do something?”
    • “I’d be the last person to tell you that saving two babies out of two million is not valuable…”
  • The board did vote to recommend that ALD and MPS-1 be added to the mandatory panel. Next week the Secretary of Health will review the decision memo but there is no time-table for addition to the NBS panel.

After all of this discussion (and much more that wasn’t relevant to our cause), there was a time for public comments. You can hear my testimony here. It is about 5 minutes long.


After the meeting was adjourned, Dr. Vockley came up to me and thanked me for coming and then told me “I disagree with what you said…but we’re on the same page for NBS.” I smiled and held in what I really wanted to say. That he could look me in the eye after knowing who I was, and what we had just gone through, and tell me something like that was maddening.

The legislative staff from Rep. Cruz’s office were there with me and we all agreed that the main thing we learned is that there is a lot of conflicting information being given from the Department of Health about the NBS program in PA:

  • They said there are two panels (mandatory and mandatory follow-up) and kept saying that both are mandatory…yet they also said that the hospitals have the ability to choose whether or not to test for the “follow-up” panel. Are they truly mandatory, then?
  • The chair of the advisory panel says he is all about saving lives through NBS, but he is adamantly opposed to Krabbe and the other Lysosomal Storage Disorders being screened. His arguments FOR ALD and MPS-1 absolutely apply to Krabbe, same success rates and treatment, but he is opposed to NBS for Krabbe. It doesn’t make sense.

The next meeting is August 23, 2016. At that meeting, they hope to further resolve some of what was discussed yesterday, but I am not hopeful that much will change. The chair is very set in his ways and is unwilling to hear differing opinions about Krabbe. The other members seemed to be more agreeable to the screenings BUT they seem to be afraid to speak up because of Dr. Vockley’s intimidating personality.

After observing this advisory board in person, it is even more clear that Rep. Cruz’s legislation is necessary. Please check out our previous post about this and contact your PA representatives!

We will keep you posted as we learn more. Pennsylvania’s NBS program is broken and we won’t stop until it is fixed!

Call to Action in Pennsylvania

Today I (Lesa) had a meeting with the staff from Representative Angel Cruz’s office regarding the legislation they are preparing to introduce to reform the way Newborn Screening is done in Pennsylvania.

The meeting was productive and we are ready to see this legislation all the way to the governor’s desk so that lives of children will be saved in our state.

This legislation is vital because, without it, Hannah’s Law (Act 148 of 2014) will be rendered useless due to the way that Screenings are done and the way that the process works in Pennsylvania. This bill would limit the Department of Health’s ability to make changes to the mandatory Newborn Screening program, like they did with Hannah’s Law (chose only ONE of the six mandated diseases to add to the mandatory testing list).

You can read the co-sponsorship memo and the attached draft of the legislation here.

If you live in PA and would like to encourage your legislator to co-sponsor this legislation, you can go to this website to find your legislator.

Underneath the photo of your legislators you will find an email icon through which you can contact them.

Here is a sample letter I wrote that you can freely customize to fit your family:

Dear _______________,

I am writing in regards to upcoming legislation from Representative Angel Cruz regarding Newborn Screening in hopes that you might be willing to co-sponsor and support this important legislation.

The bill does not yet have a number but the co-sponsorship memo was dated March 21,2016.

The way that Newborn Screening is conducted in Pennsylvania must be reformed. We are currently last in the country (by a wide margin) in the number of tests that we perform on babies, and these tests can save lives because early detection for many diseases is the difference between life and death.

This legislation is important to our family because ___________________________…

Please consider helping save the lives of children in Pennsylvania by supporting this important legislation.

Thank you,

__________________________

If that doesn’t fire you up, check out the map below. Pennsylvania is LAST in the nation by a wide margin in the number of diseases for which testing is mandatory.

  
We are hoping to see another bill introduced in the near future to reform NBS even further, but we have to take things one step at a time. We will need your support every step of the way and are so thankful for all you have already done.

Rare Disease Day at the Capitol

Today was an exciting day for Tori (and us).

Today those with Rare Diseases in Pennsylvania were recognized and their advocacy efforts were applauded publicly at the Capitol.

Tori and I (along with our friend, Michelle, who often drives Tori and me places so that I can care for Tori in the back) went to represent Krabbe and other leukodystrophies.

We didn’t know what to expect, exactly – we were told beforehand that there would be networking opportunities and a press conference. So, we prepared a flier about Krabbe and brought Tori’s business cards along.

There were many rare diseases represented, but, of course, it wasn’t even a fraction of all the rare diseases in the world (thousands). There were several speakers, and most of them have rare diseases themselves. Some legislators from the newly formed Rare Disease Caucus spoke as well.

We had the opportunity to meet Representative Kevin Schreiber from York County (he was standing right behind us and started a conversation) and he asked many questions about Krabbe and Tori. He was so kind and talked to her ❤

We also met Senator Jay Costa and saw his press secretary again (we met with her about one month ago).

There are so many rare diseases that it can seem overwhelming. Each one may affect just a few, but together they affect many.

I’m glad we could participate today and tell a few more people about Krabbe.

Thanks to our friend Michelle for taking the photos above! You can see more of her work here.

Here are a few from my phone: