A few weeks ago we participated in a fundraiser for our local children’s hospital with another Mito family, it was really fun and so nice to chat with another family who understands exactly how we feel.
A few weeks ago we participated in a fundraiser for our local children’s hospital with another Mito family, it was really fun and so nice to chat with another family who understands exactly how we feel.
Last week I had the opportunity to attend the UMDF Symposium in D.C., what an amazing experience.
The evening I arrived was registration and prep for Day on the Hill. I really had no idea what to expect. Upon arriving later than I wanted due to a delayed flight, I made it in time for the prep session in which we got a packet of information and were organized by regions of the country. A few minutes into the welcome from the staff, I started to get a sense my perception of the day was not going to be the way I had thought it would be. I opened the packet to find two pages of talking points and a group of named individuals that I would be attending meetings with along with the names of the Congress member and the person we were meeting with. I was slightly crushed at this discovery, intimidated by the information, feeling like an undereducated Mito mom for not hearing of any of these issues and the nervous that I was not going to get my agenda taken care of. I immediately was feeling defeated and sad that I left Daphne and Rich in California and was questioning my purpose. Of course I kept this to myself and just tried to listen and focus on the job at hand. I felt like a puppet of sorts for a great cause nonetheless but still not what I was expecting.
I stressed that evening trying to read and understand the information, talked to Rich and mainly tried to calm myself down.
The next day, bright and freaking early for a Californian, WITHOUT Starbucks, I got on a bus loaded with advocates headed for the Capitol. Ironically on the bus we were sitting in our group. So I was also intimidated by Dr. Boles who was in my group and a well-known and respected Mito doc in California, near me. We walked what felt like forever to the other side of the Capitol to the Hart Building and did not really prep much on what to say, grabbed some breakfast and waited to meet with Senator Feinstein’s staff member, Dr. Pete Curran. I think everyone in our group was a little nervous, it was the first time for everyone and we really didn’t know each other. We have brief introductions on how we are involved and then started with the scripted Asks. Little did I know that my mission ran alongside beautifully with the UMDF topics so I was thrilled. After our first meeting and having more confidence we realized our group was rock solid! We had a Mito Doc, a mom of a 22yr old woman who is undiagnosed, a diagnosed and legally blind 42 year old that was just impacted 1 yr prior who also used to be Chief of Staff to a Govenor in Australia and myself, a mama to a beautiful 2yr old girl. There wasn’t a question we couldn’t answer and not an angle that we couldn’t relate to. Basically you go through the asks and depending on Republican or Democrat you have different requests and ways to approach a subject. The hardest part was explaining what a Mitochondria is to those that were completely clueless and no fault to them because that was me over a year ago. Each staff aid seemed to have different knowledge on the topics and thankfully the health care reform act vote was delayed so we could still have the day. We typically had 30 minutes to give our presentation, pass out materials and answer any questions, not much time if you think about it. We were asked to snap a picture from each meeting and #dayonthehill so they could get all the pictures.
Next we met with Senator Kamala Harris’ aid. He was clueless on what a Mitochondria is, did not even introduce himself and did not seem interested in anything we had to say but for this meeting we had a lobbyist with us and thankful for this meeting that we did, she understood him and he understood her so our portion was short and sweet. I think Kamala may be too new and young to take a position on anything Mito related but I will try.
Our next appointment required us to hike back across the complex, a portion of the grounds were closed due to we think a session being held and visitors and he new fad of protesting.
We were dropped off at Garfield Circle, walked over to Hart, then to Cannon and then Rayburn. Once in the buildings the walls were long as well getting to each office. I regretted wearing heels and noticed every single staff member had flats on 😩. The underground tunnels were only available within the house and or senate but we could not take the connection between since 9/11. The heat and humidity were unreal.
The aid for MiMi Walters was nice and engaging, hopefully we can make strides with her.
Our third visit was with Congresswomen Chu herself, this was exciting as it was our first meeting with the elected official and not an aid. She was knowledgeable on Mitochondria since she had her PHD in clinical psychology so we could skip that part of our talk and just focus on the asks and a quick background on us. The personal stories seemed to hold more merit then the science or the asks, but of course you couldn’t have one without the other. She however only had 10 minutes for us. The lobbyist prepped me on what to ask her to get to my local government to make my ask a reality. I was so excited!! Maybe this is a good time to tell you what ‘my ask’ was…
Mitochondrial Diseases’ do not have a cure or treatment or an FDA approved drug. They are progressive and ultimately fatal. This has created the issue of no interest in researching the disease or creating a treatment. It would not be “profitable.” However to slow the progression of the disease and make patients feel and function to the best of their ability the Mito Cocktail is needed. This is comprised of over the counter vitamins and supplements. Since they are over the counter, insurance e companies will not pay for them, although the dosing is significantly higher than the normal recommended dosing an adult would take. So this alone makes it very expensive for families to afford. On average families pay between $500-$1,000 per month. My first thought for a ask was for these costs to hit your out-of-pocket max so a zero dollar deductible could be reached sooner for already approved tiered drugs so families could get a little relief. After hearing a few days before this the long arduous process of getting a bill in place, I decided to focus on my other and more main ask and that is to get another bill in place like the one currently in play in Massachusetts, to have Insurance companies pay for the Mito cocktail. It had been in a favorable position but has been amended a couple times and I believe this can happen in California and then make efforts for it Nationally. Dr. Boles really explained why this was worthwhile versus going for the orphan drug expense that can be at least $10,000 per month.
I was so thrilled that somebody I spoke to actually got it, most I mentioned this to looked at me like I was crazy.
The day was going great and we were on a pretty good high, until our last appointment.
It started off rough, we tried to get in early, so we didn’t have to wait 2 hours, they would not even entertain us unless the Congressman’s constituent was with us, umm what?! Not once during the day did anyone ask that.
This guy was a real special person, a very radical Republican who loved Ronald Reagan and made Trump seem normal. Almost every inch of his wall was covered in memorabilia (mostly Reagan and 3 surf boards). He told us he just turned 70 two days before. He did not let us introduce ourselves, we were late getting in and he immediately asked what we were asking for. We knew the approach to take with a Republican (cost savings) so Dr. Boles took that angle. Our first request was for him to join the Mitochondrial Disease Caucus, he shot it down before we could even finish saying the name, he said caucuses are worthless and a waist of money and he would never join, “oh great” I thought. Then we quickly mentioned the NIH and DOD efforts just to highlight, asked him to lead the NIH letter and he questioned us hard about it reallocation of funds for NIH and we explained it was not for that but just inclusion of he Mito community into the studies. Next came the Medical Nutrition Equity Act and my specific ask and he shot those down, all of this talking was by Dr. Boles and his actual constituent was another Doc and she was silent in awe of his behavior. He said he would never sign a bill that told Insurance companies they had to pay for something but would rather pay the $10,000 a month and have Medicare or medical pay for it, we were so frustrated and confused by his behavior. He complained about government insurance and how hey had to switch to Obama care and it was expensive out-of-pocket for him, I was dying. Then he told a story about when his daughter was 9yr old got Leukemia and went through Chemo and how much he paid and not to worry she was cured and was going to be fine.
I was seriously about to jump out of my seat in anger and could see the jaws on the floor around me and pulled out my phone, got my latest family picture up and interrupted the conversation and said “I am so grateful that your daughter was able to get treatment and that there is an FDA approved drug for her, let me introduce you to my 2yr old daughter who has a very rare Mitochondrial disease that has no cure, no treatment and is progressive and fatal and Insurance does not pay for her.” I am pretty sure my spiel went on a little more but it has taken me this long to cool down. I did start to breakdown but sucked it up and finished. I did not breakout a picture of Daphne all day, the others were respectful, this guy was not. The reality is though we will likely need him and I can’t burn that bridge. We did have to excuse ourselves from his office to catch the bus and that was after almost 45 minutes, I think in one way or another we made an impression. He made my glass of wine taste even better that night 🍷. I had to give him some endearing comment about his similarity to a certain guy in his office, he loved it 😖.
The rest of the conference was about networking and attending sessions which was great. I need to follow-up with everyone I talked to yet and will but also trying to manage my inbox from work 🤦🏼♀️.
Every two years UMDF goes to the Capitol, if anyone is interested in joining me, just let me know.
After 3 tough months battling the insurance company to continue coverage for Daphne’s medicine (N-Acetyl-Cysteine) that may partially reverse her disease…
Excitement is an understatement 🙌🏻
My last update on this topic was winning the appeal to get a 3 month courteous fill to give me time to fight them, many hours on the phone with various agents, trying to figure out the right form and process, trying to get the doctors office to do their part because in the end I can do all the work except complete the final paperwork, so annoying but thankful they stuck it through with me and I will be sending them a sweet 🎂 treat for being so sweet (a little exaggerated 🙄), but my dad always taught me “you attract more bees with honey”!
A special shout out to Paula at the insurance company. I fell in love with the first agent I made an appeal with several months ago but Paula took it to a whole new level and really cared and took ownership in helping me.
You may think it’s easy but seriously some people and processes are setup just to be difficult just to make you quit, I swear.
Follow me for a minute here….
Believe me it’s true, in my own job I see it and even play off it ( sorry not sorry sometimes) so that is just the case in other careers as well.
One thing that has always given me the edge to not giving up are those people that say “Who’s going to own it? Are you going to own it?” They are saying this knowing good and well they should be the ones owning it but you being the better person, steps up and says, yes I will.
In the back of your head your doing this, because 1. You’re so good at it 😜, 2. You will learn valuable lessons along the way, 3. At some point in the future it will benefit you.
So thank you to all those who have done this. You have gotten me to this point. Thank you for teaching me how to help others want to do this as well. My rule in dealing with the insurance folks is to be nice, courteous, understanding, listen, be realistic in what I am asking for and take ownership of the issue. Paula did all of those things and more. She called me everyday when she said she would, to check on the status and she made the final step to get this approved happen! Paula my dear, you have just made my dreams for Advocacy for Daphne’s Lamp a reality.
I think this shirt was made for me and every other Mito mama I have met!
***It’s not my most glamorous picture but I will be honest I am usually in pajamas by 6pm and tonight squirmy little Daphne would not cooperate very well but that’s my life.
This is just the beginning, I am going to D.C to meet with Congress June 29th and I will be pushing for the next big thing.
Until I have to appeal again in another year, I am making steps to make this fight even easier, stay tuned for those details.
This is for my daughter Daphne and what the future of those involved in with #daphneslamp will look like. I don’t take NO for an answer and I will put up one hell of a fight, so get ready. Get on board with the movement it’s going to be BIG!
One thankful and Happy Mama tonight 😊
This is BIG!
The BIG Announcement aka my SECRET Project is finally ready for it’s debut!
I have created with the support of my husband:
Daphne’s Lamp 💚which is a 501(c)(3) non-profit!
Our Mission: is to help people with Mitochondrial Diseases afford medical expenses.
About Us: The founders, having experienced the struggle first hand with healthcare to get approval for therapies for their daughter. Daphne’s Lamp seeks to lighten the burden of Mitochondrial Disease on patients and their families by increasing access to quality of life improving prescription drugs, vitamins, supplements, orthotics and mobility devices through financial aid and advocacy.
Daphne’s Lamp was inspired by the story of Florence Nightingale who was a hero in Victorian England for nursing wounded soldiers in war zones, giving aid and comfort where others were unwilling. She was known as “the Lady with the Lamp.”
From that Daphne’s Lamp “Let There Be Light” was developed to shine light on an area of darkness in more ways than one. Let There Be Light also uses the acronym for Daphne’s Disease LTBL (Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate).
I have been anxiously awaiting this paper for weeks now and it finally came!
I will be donating a percentage of my profits from my side businesses to my non-profit.
I will be visiting the Capitol this summer to make a change, get ready congress, I’m coming for you 👩🏼💼💪🏻
Thank you to everyone that has helped!
#daphneslamp #lettherebelight #mitosucks #daphnestrong #mompreneur #determined #timeforachange
For those of you that are reading this and are not living and breathing the many struggles of the Mito World, here is a little explanation as to why this post is so important to me:
There is no cure or treatment for Mitochondrial Diseases, so drug companies rarely spend the dollars to research drugs that will help improve the lives of those living with a Mitochondrial Disease. This means over the counter vitamins/supplements are the only options for the “Mito Cocktail”.
Today I had some time and decided to pick the “fight” back up with the Insurance company that I started Jan 1 when I tried to REFILL a prescription that I had been getting for months for Daphne.
Dec 2016 the Rx was $0
Jan 2017 the Rx was $50
We could get a similar drug over the counter for $15 but it is 500mg and Daphne is prescribed 300mg.
Your probably saying not a big deal just split the capsule and call it a day. Yeah we did that until I found a compound pharmacy to make the EXACT dose that she needed and ladies and gents I worked hard on that so I was not going to be told different now in 2017.
*Note a capsule cannot be perfectly divided as the contents inside are not guaranteed to be equally distributed. So you see my driver here? I want it to be perfect for my child, she deals with enough crap we cannot control, this I can.
Well I had a great experience with Gloria from Georgia at the end of 2016 figuring out why insurance would not cover this drug and how the pharmacy was running it incorrectly and how a filler they use was not an allowable cost and she got the pharmacy to just give me the $9 filler for free.
*Note I have a little history with this pharmacy, they screwed up a very, very expensive prescription for my dog and I did not flip out on them so yeah basically they owe me big since they didn’t lose their license over that. My only comment with a smile on my face was, good thing it was just my dog and she is still alive and you know my daughters Rx is filled here so don’t screw that up or we will have a problem, love mama bear. So yeah I basically get whatever I want from them.
So when I started having issues I wanted Gloria back but Jessie didn’t want to give her to me and he wanted to help and said I understand and will call you back in 45 minutes. Over a month later and yeah I was real busy in that time….nothing from Jessie. Don’t worry Jessie I will never ask for you so you will never have to deal with me.
Today I called and spoke to a few people and a few different numbers and was frustrated as this was not how things were handled in 2016 and then had to hang up on them when a coworker came by (probably someone watching out for me above did that) and so I called back and spoke to the most lovely of humans and I forgot her name. Anyhow she was with Express Scripts within our insurance.
Lovely lady in Express Scripts let’s call her “G” walked me through, answered all my questions, probably appreciated my knowledge to date and gave me the tools to be even more informed and have all kinds of access at my finger tips.
*You may have known this and maybe I did since I answered the questions that I asked but basically if you get a RX filled that costs $5,000, insurance pays $4,000 and your EOB says you owe $1,000 (eventhough we never pay what the EOB says) that $1,000 goes to my out of pocket max.
SO….I called her Mito Doc Nurse, explained my craziness, she was excited and said let me put the request into the doctor. I am asking right now for a 3 month supply for the $50 versus the 1 month supply and I also asked for him to appeal the ubiquinol and for him to provide a larger quantity for the other Rx she gets so we have a buffer.
I am going to UMDF on the hill this summer and didn’t know what or how I was going to talk to our congress person about health care, insurance and prescriptions and present and defend something that is obtainable but I believe this is it. This is one step to helping Mito Families.
To get Over the Counter Vitamins and Supplements to count towards In Network Out of Pocket Maximums!
The company I buy Daphne’s Ubiquinol (CoQ10) from is fighting the Mito Cocktail be covered by Insurance so I am sure this will be a start and have some backing.
The ultimate message here is:
Don’t give up or give in, talk to people, talk to doctors, talk to your pharmacist, talk to the insurance company to learn as much as you can.
Be polite and nice, it’s never the person on the other end that made health care the way that it is, it is however their job to ADVOCATE the best that they can for you.
My dad always said “You will attract more bees with honey”
I am not a person that is easily defeated, I do not take NO for an answer. There is always more than one way to skin a cat.
There is only one person that will be the best Advocate for your child and that is YOU!
It’s not like she doesn’t battle with enough.
Daphne had her follow-up with the Neuro-Ophthalmologist this week and I wanted to discuss something we noticed a little over a month ago that we just called “Wonky Eye.”
We talked to her regular Neurologist about it but he could not get her to repeat it which was good because it was minimal but it has been more apparent lately and I even grabbed some pics to show the doc in case she could not get her to do it.
Now she has what she calls drifting outward which is common in patients with neurological conditions.
So we will try to correct it and strengthen each eye with Patching Therapy (1 hour per day per eye), maybe glasses but right now she will rip them off and eat them…..ABSOLUTE last case scenario is surgery. We will follow-up in 2 months to check her progress.
I have ever said I HATE HATE Mito and wish it did not exist. This is simply not fair!
Wonky Eye on the Right
Only one week in Sept is Mitochondrial Disease Awareness, this year its the 18th – 24th.
On my Facebook page I am making the awareness for the entire month as the number of people I have encountered are clueless on the disease.
I cannot necessarily fault them as I was the same way so I am going to take this time to educate all that pay attention.
My post today is simple….
What are Mitochondria?
Mitochondria are often called the ‘cell’s powerhouse.’ They are specialized compartments within almost every cell. They are responsible for producing 90% of the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce energy.
What is Mitochondrial Disease?
Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy. As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.
Imagine a major city with half its power plants shut down. At least, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow your body to walk or write, your heart may be weakened, and you may not be able to eat and digest your food. This is precisely the situation people with mitochondrial disease find themselves.
Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse and often progressive. They include: strokes and seizures, muscle weakness, gastrointestinal disorders, swallowing difficulties, cardiac disease, liver disease, diabetes, blindness and deafness and susceptibility to infections.
I have been very busy lately and have not even checked the Hypotonia Group I am a member of but amazingly enough when I do there is ALWAYS a post that pertains to a thought or an immediate need I have.
A mom posted about this product and I think it is so clever.
I am can’t wait to get one and try it out. They have some other really great products on there as well. I love this as well (so versatile and compact).
I get really irritated when my husband and daughter just lay Daphne down next to them while they do something else like watch TV or read a book.
I keep telling them she needs to be upright to play not laying there like a vegetable. She needs to be engaged and interacting and learning as much as possible.
Of course just laying her there is easier because she can’t scoot, fall over or require much attention.
Don’t get me wrong there is a time and place for laying flat and floor play to help her rollover and push up with her arms but, not on the couch or the bed. Those surfaces are too soft for that.
I hope you can share this site with other families that may benefit from this.
So my super smart, amazing research scientist husband spends just as much time researching Daphne as he does his job.
Don’t ask me when he has time for the rest of life.
Seriously he researches A LOT!
He found an article that I hope has changed our lives.
An article that I hope helps others.
An article that I have been so scared to mention it out loud, let alone write about it
…because something bad would happen (don’t ask me what)
…people would bombard the scientist
…maybe science would say too bad so sad it will not work
…our doctors would not believe in it
I was scared. I still am.
But I know the more science knows the better Daphne will be.
So here it is reversible
What is basically states is that there are 4 reversible mitochondrial diseases per her research. 2 fully reversible and 2 partially reversible based on a mild state and age diagnosis and some other stuff…..read it.
Daphne’s Disease is listed as partially reversible!
I mean when I read it and Rich and I talked about it I was so excited but then again contained my excitement so I didn’t jinx us or whatever else.
I met a Mito Mom who lives in Canada on a Facebook group I am a member of who told me to research articles and contact the authors to see what they know and to do the same with clinical trials since neither one of our kids are old enough to participate.
I said Rich this is what the Mito Mom said, you have to contact this doctor. So he did and she happened to respond super fast and was attending the National Symposium for UMDF in Seattle that we talked about going to but didn’t but we connected her with our Genetic Counselor so they could talk and meet.
We shared the article with our Metabolic Group and discussed the supplement N-Acetyl Cysteine which they wanted to discuss with us yesterday.
There are some GI issues that could come from it and maybe toxicity of the liver but she is functioning normal to date so we have to be a little careful with this supplement and will follow-up in 1 month to monitor her levels.
Also our San Diego Doc was just in the UK visiting her lab because of funding or a proposal she had requested. Small freaking world!
As our Metabolic Team stated we are now in a very small select group in the World and will get to know just about everyone associated.
My angry point of this post however is that the doctors (both the NeuroMet team and the San Diego Doc) did not bring up this article or any science from it and it was published over a year ago. RICH had to find it and really push them to explore this option.
This is even more justification that no matter how great of a medical team you have caring for your child, you are the only advocate for your child and much exhaust all means necessary to find a cure.
**This is exactly what I am talking about with all care not being equal and wanting to help bridge that gap for others that are less fortunate and do not have the resources or intellect to find this stuff out. I truly believe that is one of my missions in my baby being given this stupid horrible disease. I want to make this happen and do not want to be a website like all the others in memory of my daughters life.
So the coolest part is the Doc in the UK recently received some money to study fibroblasts in the EARS2 gene mutations and she is willing to receive Daphne’s sample. I mean have any of you ever had this type of connection?!
Ok, maybe you have but don’t burst my bubble, it’s stuff like this that got me through yesterday’s procedure.
I hope and hope that she can find something to help Daphne and advance science. I have no idea on how long this will take. I will keep everyone updated.
There is another article on a suggestion of an intermediate stage and the use of another supplement but we are pumping the breaks on that one as we will wait approx 3 months before starting Daphne on anything else.
So you know these supplements are NASTY in smell and taste.
Two of them we put in her bottle and hide it with a combo of breast milk, formula and oatmeal cereal. We have tried oatmeal, applesauce and yogurt but to get her to eat enough to ensure it is all consumed is not fun, even if we do one bite.
Any tips for getting a baby to take them?