Helping Patients in Need

Three years ago, we were lucky. Once Morgan was diagnosed with Juvenile Dermatomyostiis, a rare autoimmune disease, we were able to see a super specialist at a Center of Excellence. This means that we got to have a world expert on this rare disease that only affects around 5,000 kids in the US give her expert opinion on the way that we should treat Morgan's disease. She knew from experience that she needed to be aggressive because that is what has made the biggest impact on the hundreds of kids she treats.

Since then, we have met many kids who didn't have that luck. They saw a doctor who is less experienced with JM, didn't know the most current research, and didn't have experience with many patients (often they have only seen a few in their local area). Each time, we were so thankful that we had such good care right at the beginning. We believe that it has made a huge difference in the outcomes for Morgan.

However, we don't think that luck should determine who can see these doctors and who can't. Part of the challenge is educating the masses that these super specialists exist at Centers of Excellence for most diseases. In fact, these Centers of Excellence often work with partners like American Airlines and the Ronald McDonald House to help those who can't afford it. Since most of these Centers of Excellence require that the patient bring ALL of their medical history before they can be seen, it becomes yet another barrier to people seeing these specialists.

I am not sure if you have ever tried to get your medical record (you should!), but it is not an easy process. Imagine being overwhelmed with a new diagnosis that brings many doctors visits, missed days of school and work, financial stress, and family stress. Now, you have to contact each provider and sign different forms and follow whatever process they require for you to get the records. Then, you have to follow up on each one, often multiple times, to make sure that the doctor actually gets them.

Out of this experience, CareSync was born. CareSync offers an application on the web and mobile to store all of these records for you to access forever. But that is not the great part. The best part is that the CareSync Specialists will actually do the work to get those records for you so that you can concentrate on your loved one. These CareSync Specialists will also summarize the information and keep it up to date after each appointment. You can relax and know that you don't have to give the same medication list to each provider. You can relax knowing that you will always have access to your information no matter where you are in the world. You can relax knowing that you will get appointment reminders and task reminders to be sure you don't forget important items to do. You can relax knowing that someone else is looking out for you in this healthcare maze.

I believe that CareSync should also be available to those who cannot afford it. I believe that everyone who needs access to a Center of Excellence should get it.  We started a campaign on Medstartr to create a scholarship fund. We will allow Centers of Excellence to refer to us and we will allow patients to apply for the free CareSync service. CareSync is doing its part to help these patients. Will you help us? We are offering many buy one get one packages through the campaign on Medstartr. You buy for yourself or someone you love, and we will donate one to someone who needs it.

You can even donate just $15 to show your support or $35 to get a cool t-shirt. The buy one get one packages start at $99. I hope to see your support.

Sincerely,

Amy Gleason

Three Years After Diagnosis

Three years ago today, we first heard the word Dermatomyositis. I still remember trying to figure out how to say it. Where did the emphasis go? How do you spell it? What the hell is it? I still remember the panic and sheer terror I felt not knowing what it meant when the doctor told us she had this disease we had never heard of with tears in her eyes. “I am so sorry,” she said. What could it be? I remember watching what I asked because I didn’t want to scare my sweet 11 year-old daughter any more than she was by the demeanor of the doctor.  I remember frantically trying to text my parents, my husband, and my doctor friends to see if anyone knew anything about it.

I remember getting the MRI and having to go to a different MRI place across town to get it done that day, and I remember Morgan freaking out over having her blood drawn. I couldn’t understand what to do about Morgan’s plans for camp as she was scheduled to leave to go out of state to camp in 2 days. Would she be ok on the new steroid prescription? Should she not go? I remember reading everything I could get my hands on. I went through every page that Google had to offer. I found a blog of a dad who wrote about his daughter, and I read the entire thing – every single entry for the years he blogged. I found Cure JM and thankfully Shari Shobe was kind enough to reach out to me and talk by phone. She was amazing and gave me such great info that I felt somewhat better.

Throughout the last 3 years, we have learned a lot. We have grown and changed in good ways and not so good ways. We have learned the healthcare system in ways that I wish we hadn’t. We have become masters at figuring out how to navigate, and we still struggle with how to manage all the appointments, all the data, all the frustration, all the should do’s and the shouldn’t do’s, and how to have a life that is not all medical.

Morgan has started a new sport of horseback riding and has truly found a new part of herself. This sport also gave her a group of friends who are fantastically down to earth and understanding. It has given her confidence and activities she can do with friends. I am so thankful for this.

We have added some meds and reduced some meds. She is still getting monthly IVIG infusions, monthly Solumedrol infusions, and weekly methotrexate infusions. She still takes 7 other oral meds for a total of 17 pills a day. But, she only missed 39 days of school this year – down from 55 last year. She has ridden horses most days.

Lessons we have learned:

1. Don’t be afraid to speak up. You know more about what is typical for you than the doctor does. He/she only sees you periodically and you live with your symptoms, side effects, good days and bad. They only know what it is like if you paint the picture for them.
2. Doctors like data. Don’t tell them that you THINK your pain was worse. Chart it. Don’t tell them that you THINK the med caused side effects. Document it. They are much more responsive when you have the data
3. If the insurance company doesn’t pay claims that you think they should have, document everything. Send all correspondence by certified mail. Open all mail from the insurance company the day it comes because they use tricks like very short times to respond. If all else fails, use change.org to get your story out like I had to this year.
4. Your life changes when you have a chronic disease or someone in your family does. Yes, you will always wonder what life would have been like if it hadn’t happened. Yes, you can’t do some things you could before. Yes, it is unfair and a pain in the butt. However, over time, you learn that there are also some silver linings if you pay attention. Things you wouldn’t have tried before. People you wouldn’t have met before. Understanding of what others around you might be going through. Victories, even if they aren’t the big Cure, over some battles you face.
5. Get the high deductible health plan. Nobody wants to talk about this, but if you are going to have a lot of medical bills, you are most likely better off picking the high deductible plan and hitting the max out of pocket. You need to look at the difference that you will pay monthly for the copay plan and see what that total is for 12 months. Is it close to the out of pocket max? Would you be likely to go over the difference? If so, pick the high deductible plan. If not, pick the copay plan.
6. Look for resources if you need help. There are a lot of organizations that can help with flights to see specialists who focus only on your specific disease (like American Airlines), places to stay (Ronald McDonald House), medication programs (many by pharma and some not), scholorships to conferences as a patient, and many more.
7. DEFINITELY find a patient group. You will learn more in 2 weeks of being part of an active patient group than you will from multiple doctors visits, reading all material you can find, and talking to any other experts you can find. These people live with or care for someone who lives with the disease every day. They will BLOW YOU AWAY with their knowledge, ideas, and me too. Sometimes, that “me too” will be just what keeps you from going over the edge mentally. I certainly don't know how I would have survived without Cure JM!
8. I am the worst to talk about this one, but realize that you most likely can’t do it all. It is ok. If you miss an appointment or two, most likely it isn’t the end of the world. Try to prioritize and always call as soon as you can to reschedule. NEVER just miss it without rescheduling. Keep a calendar that you family can see and make sure they are armed with the information needed to make them confident enough to take a child or other loved one to the doctor. Yes, you might know more and be able to go deeper, but sometimes you just can’t do it all. Ask for help.
9. Get a glass of wine, dinner, or something else with friends at least once a month. Don’t talk about health stuff. Engage about other things in life. Socialization is important. Don’t forget life even if it seems like yours is chaos.
10. Don’t expect others who aren’t in your shoes to understand. You most likely didn’t understand before you went through it (or at least I didn’t for sure!). Sometimes it seems like they don’t try to get it, and some don’t. But, I have decided that it is better to believe that they want to but are just not equipped with the skills.
11. Ok, one more. Whatever happens, keep putting one shoe in front of the others. Some good days will keep you going through the bad ones. When they don’t see #9.

Off we go into our fourth year of the world of Juvenile Dermatomyositis. It has impacted me so much that I am creating tools to help people like our family bridge the gaps in healthcare. Our family now has help keeping health data current so that we can share it when we need to, and we have a common calendar and task list to work from for our health. If you also struggle, please share ideas that have worked for you, and please check outCareSync to see if it can also help you and your family.

Thanks so much to everyone who has supported us during our journey!

What to say to people who are struggling

I read a blog by Shannon this morning that can be found HERE. It really hit home to me.  She was writing about the isolation that you often feel when dealing with a chronic disease or a child with a chronic disease. In the beginning of the journey, people try to say things but many don't even then because they aren't sure of the "right" thing to say. I agree with Shannon. There is no "right or "wrong" thing to say. Just be there. Say something. Most likely the one who is sick or caring for someone who is sick doesn't know the "right" thing to say either!

Especially, this paragraph was great.

"So for those of you out there who are struggling with what to say, just say hi. Send a quick note letting the person know you are thinking of them. Give them a hug when you see them. Leave some flowers at their door. Call and say, I don't know how to help but I want you to know that I am here for you. Those small gestures mean a lot to someone who feels so isolated by their circumstances."

This really hit me because of the isolation that comes over time. There are so many people that I used to talk to regularly that I haven't talked to in months or even a year. I sometimes wonder if I aggravated them with fundraising, talking about JM, not being able to attend their birthday party or happy hour or other event. But, most of the time, I realize that we are all just so busy in today's world that they probably are just busy and either forgot or just don't know what to say.

I have been a caregiver for the last (almost) three years for my daughter, and recently I have had my own health challenges as I was diagnosed with an early stage of breast cancer. I haven't really talked to many people about it, but two of my friends have been there every single step of the way and always let me know that they are there for me. They know to just say anything. One day, they left a card at the door. One day, they brought lunch. They drove me home from a procedure. They dropped by at dinner just to say hi and give a hug. But, most importantly, they just said "we are thinking of you" with their texts, calls, and all the wonderful kind actions. What fantastic friends. Love you Carmen and Jen! 

So, Shannon said it so well. Just say anything. :) 

New Patient Experiences

I am having a health issue that was concerning enough to me to want a mammogram immediately. After working hard, I found somewhere that would give me a same day appointment. When I asked f they did same day results, they said it is usually 48 hours. Who comes up with this stuff? Apparently not someone who is worried about something on a Friday. Not someone who doesn't want to worry all weekend if it isn't necessary. And certainly not someone who wants answers to her concerns. I even asked if I could pay more to get it read today, and they said no.

So, I called my doctor back and asked if he could order it stat. The nurse said she would ask and put me on hold. She came back as said, why do you need it stat? Seriously? So I told her that I didn't want to be worrying all weekend and that I am very nervous about it. She said ok, and they faxed over a stat script.

We will see how it works out.

After my Change.org petition to BlueCross BlueShield of North Carolina

In case you missed out on my recent healthcare drama, here is a very short version (more details in the link below). For the last two years, Morgan has been getting IVIG treatment for her Juvenile Dermatomyositis. Starting last October, we found out that the insurance was sometimes paying for it and sometimes not and the hospital got involved after they had been working on it. After trying to follow the system and having all of my appeals denied, I created a petition on change.org. My husband Mike had seen another petition to BCBS and forwarded it to me. At the time when he sent it, I was sitting in the hospital next to Morgan who was getting this exact treatment. I started doing some research online about BCBS to see if there were other stories like this, and I saw a new story that their CEO and VPs had just gotten ENORMOUS bonuses. Something in me just snapped. So, I started writing. I didn't really think that it would get much attention or have an impact, but it gave me a way to tell my story. You can read the petition HERE.

I posted it on Friday and asked some friends to read it and give me edits. Before I could even get edits made, one of my friends started posting it to every friend individually through a message on Facebook. So, I started sharing it and asking others to share it. Before long, my amazing friends and the incredible CureJM family started sharing it as well. The first few days, it was exciting to watch the numbers climb. It was equally interesting to see how far and wide it had reached. Six days later, it started going crazy. At times it was going by over 100 signatures per minute. The comments people left encouraging us were so incredible that I literally sat crying at the computer several times. My daughter sat reading every comment and kept clicking refresh to time how many people had signed it lately. She really felt the support and really appreciated it. That Thursday, 6 days after it started, I got a message from BCBS on change.org asking for my subscriber number. I didn't hear anything back from them on Friday.

We watched it continue to climb all weekend, and on Monday, I received a call from BlueCross BlueShield. I couldn't believe they were calling. They told me that they were going to pay all of the claims. All of them. I was in such shock, I could hardly believe that this battle was really over. That day , I got a letter from them in mail explaining that they would pay the claims from 2012, but it didn't mention the claims from 2011. When I called back, they said they would send another letter. I have since received that letter as well, so I now have it in writing that they will pay the claims.

I was a bit disappointed that they didn't seem to really want to understand WHY the problem happened in the first place, why the appeals done through the proper channel were denied, and why it took a petition to make progress. However, I was so overjoyed that they did the right thing that I was jumping up and down! We have authorization in place through October, and then we will need to get authorization again.

Lessons Learned
1. If you are having a procedure or treatment done, make the hospital get the preauthorization IN WRITING and not just over the phone. They will say the phone is enough. Don't believe them. Demand it in writing.
2. Even if you are getting mountains of EOB's, go through each one and call the insurance company yourself. I know the tiny little superscript indicators that refer to a legend on a different page are difficult to read and keep up with, but do it anyway. We get so many claims that we tend to rely on the hospital or provider to bill us and then we know if something is right or wrong. In the past, this has seemed to work for us, but in this case it caused a delay while the hospital appealed it without us even knowing that they were appealing.
3. If something is wrong, call the insurance company. If they don't help, appeal.
4. Once you appeal, OPEN ALL MAIL from the insurance company IMMEDIATELY. I used to stack all of the envelopes and go through them every 2 weeks or so, but I learned that they are somewhat tricky and will send letters that say you have 5 days from the date of the letter to respond. I got one of those letters on the 5th day and had to fax a response that night to make sure we met the timelines.
5. Make sure you have a friendly partner at the health provider. Norma, the most amazing nurse on the planet, helped me so much with getting this resolved. I would have been lost without her.
6. Our healthcare billing system really has to be the most complicated process on the planet. I think it is even worse than IRS taxes.
7.  If the regular process fails, use everything in your power - even an online petition!

This whole experience really enforced my belief in social media and the power of the internet. It is truly amazing how quickly you can get information to spread. It has also strengthened my resolve to be involved in changing the healthcare system. We simply have to make it easy for patients and their families. It is way to difficult.

It also really made me think about our system in general. I never even knew that IVIG infusions cost $10,000. Why are they so expensive? Should they be that expensive? if we got it as a cash paying patient, would it be cheaper? Are there any alternatives that work as well but are cheaper? We need to start thinking about healthcare as a consumer process.

Also, what is up with Explanation of Benefits? Really? In 2013, we can't explain what is happening better than those horrific documents?

Thanks so very much to all those who signed and shared the petition! Thanks also to BlueCross BlueShield of North Carolina for doing the right thing.

Rare Disease Day

Today is Rare Disease Day. It is a day that I came to appreciate much more a few years ago when my daughter was diagnosed with a rare disease. When you put them all together, rare diseases actually affect a lot of people. It is estimated that rare diseases affect 300 million people worldwide, and that 30 million in the US alone have some type of rare disease. Hearing that doesn’t make it seem so uncommon, does it?

When you think about the fact that most of these diseases take a year to get diagnosed and that 95% of them do not have an FDA approved treatment, the patients who have these diseases really struggle to get diagnosed and then to find good care. Many times the physicians who see a patient with a rare disease has never seen a patient with that disease before. He may be relying on out of date information. The patient may never meet another person who has that disease, and they may feel very alone in their healthcare journey. When you consider that as many as 50% of people with rare diseases are children, it is even more frightening to me. This infographic really helps tell the story.

There are three main problems that people with rare diseases seem to relay when asked. First, it takes way too long to get a diagnosis, as there is just not enough awareness about these diseases. Secondly, once you get a diagnosis, there is not a gold standard of treatment that is available or even agreement in many cases on what the treatment should be. Thirdly, there isn’t enough research to find treatments and cures for these rare diseases as most research is done to find cures for more common diseases.

Today, I am very thankful for the National Organization for Rare Disorders (NORD) for focusing on this population starting 30 years ago today.  NORD was instrumental in getting the Orphan Drug Act passed to encourage the development of treatments for rare diseases.  I am thankful for the awareness that today brings to all of the people who have not heard of rare diseases. It is always my goal to teach more people about rare diseases because maybe it will help someone get diagnosed earlier and begin treatment faster.

Of course, my passion for rare diseases began on a personal note.

It is a morning that I will never forget. June 18^th at 8am. It came after a very long week of waiting. What originally seemed like a pesky rash had obviously become much more. Even though the doctors thought it was psoriasis, deep in my gut I knew that it was much, much more. As we waited for the biopsy results for a long 7 days, I went back and forth between convincing myself that it would be psoriasis and freaking out that it might be something much worse. When we arrived in the exam room, we were told that the biopsy results weren’t back yet. The nurse assured me that the doctor had noted that she was almost sure it was psoriasis. As we are driving away, I got a phone call to come back immediately. I knew at this moment that the news would not be good.

As the doctor carefully tries to tell me the biopsy results, she keeps saying this word that I cannot quite understand. Now, it is a word that rolls off my tongue, but at that moment Juvenile Dermatomyositis was as foreign and scary as can be. As the doctor got tears in her eyes telling us about this rare disease that affects most of the body systems, I because very protective of my then 11 year old daughter. She is looking at me with this terrified look because she knows something is very wrong, and she is scared. I didn’t dare ask more details in the exam room, as I had no idea what the answer might be in front of my daughter. Tests were ordered, and we were sent to the pediatrician to verify the medications that the doctor ordered were appropriate for her.

I started googling right away and of course saw the “death” word in many of the articles. This was not the encouragement that I was looking for. I called a dear friend and asked him to be looking it up in his medical journals, and he started reading to me as I was driving.  In the next four weeks, I am pretty sure I googled Juvenile Dermatomyositis at least 1,000 times. I read everything I could get my hands on. My daughter’s doctor had never seen a case of it. Every physician friend I know had never had a case of it. We were referred to a pediatric rheumatologist who couldn’t take an appointment for 3 months. THREE MONTHS!?!?! What do we do in the meantime? How do I know if something is wrong? How do I know if the steroids you are giving her are helping? How do I know if they are not? Three months?

It was that week that I found the Cure JM organization, a non-profit dedicated to finding a cure for Juvenile Myositis, which is a rare autoimmune disease that affects about 5,000 kids in the US. Without this group, I am not sure how we would have survived the almost 3 years since diagnosis. This group of parents works tirelessly to raise awareness, to provide support for families, and to fund research. Most of us feel that without CureJM, there would be little to no research done. The fundraising efforts have helped create three centers of excellence for research and treatment, and it has even funded the first book on Juvenile Myositis for patients.

Thank you to organizations like Cure JM and NORD for paving the way to improve the lives of people with rare diseases one-step at a time. I am proud to do my part in the movement to raise awareness and to raise funds for research. I look forward to the day that there are more treatments and cures for rare diseases, especially Juvenile Myositis.