Dear JDCA (Juvenile #Diabetes Care Alliance)… Part 1

hands-talking-1311915-640x480Over the past few weeks, I’ve been seeing infographics produced by the Juvenile Diabetes Care Alliance (JDCA) regarding “cure research” and major diabetes organizations.

The infographic is not flattering, and like everything related to statistics, not entirely truthful. (JDCA even admitted in a post on FB that they made some “judgment calls” in their numbers.)

At first, I ignored the repeated posting in Facebook groups of how JDRF and ADA have not done enough to find a cure for us, but after a while, the bashing became nothing but a “I hate these organizations and I’ll never donate to them again. How dare they take our money and do nothing.

I spoke up and reminded individuals in those groups that there are MANY ways to use the donations raised through walks and rides and other fundraising opportunities, but that ALL of the donations were being used to help people with diabetes, whether it be for research or for support. (And I also reminded them that there was a marked absence in this infographic of where one should be donating…)

My opinion voiced, I went on my merry way, living my life with diabetes, until I got an unsolicited email yesterday from someone claiming to be an employee of JDCA, asking me to promote, on my blog and through social media channels, their petition to the major diabetes non-profits, DEMANDING that JDRF and ADA use 30% of all donations for “practical cure research” through my blog.

Thank you for the invitation, JDCA. I’m going to pass.

Instead, I’m going to take my blog and use it took peek into what your privately funded non-profit, founded by the CEO of Activision Blizzard Entertainment (and a parent of a child diagnosed with Type 1 diabetes at the age of 2) wants us to focus on, rather than telling us what JDRF and ADA isn’t doing.

magnifying-glass-1240025-639x397As I began writing this and hit 2500 words, I realized that this needs to be digested in more than one sitting, so I’m splitting this into 2 blog posts. (Mostly, because no one except masochists read 2500 words of my blog at a time and because I WANT YOU TO READ ALL OF THIS IMPORTANT AND UNBIASED INFORMATION.) Today, I’m covering just the Transplantation “practical cures” and you’ll get the others tomorrow in Part 2.

Juvenile Diabetes Research Alliance

According to a WSJ article, Mr. Kelly’s family foundation, the Brian and Joelle Kelly Family Foundation, has donated $1 million dollars (as of  the 2013 article stated) to JDCA. The goal of JDCA is to help donors “become educated about charities that are focused on a “practical cure” for Type 1 diabetes.

Note: Hey, I have no problem with the fact they have spent $1 million dollars to create a “watchdog” organization. They could have spent it on a boat or a house or funding one of their “practical cure” projects. If you’ve got money, you also have the right to spend it as you see fit. I also believe in watchdog organizations, as long as you provide factual, correct, public-facing information.

“Practical Cure”

The Juvenile Diabetes Care Alliance states that they want a “practical cure” by 2025. For their definition, a “practical cure” meets the following four criteria:

  • Minimal Monitoring (checking BGs less than once per week and a A1C between 5-7%)
  • Being able to sleep without worrying (about hypoglycemia or hyperglycemia)
  • Being able to eat whatever one wants without having to evaluate carbohydrate intake
  • Minimal side effects, understanding that some insignificant side effects are “acceptable”

Sounds reasonable, right? I’m all for that, because that elusive “don’t have to do anything ever again, it’s like magic and you don’t have to think about diabetes for the rest of your life” is a dream.

It then begs the question: What is JDCA’s idea of a practical cure?

JDCA’s Four Ideas of a “practical cure”:

  • Islet cell transplantation
  • A device that mimics the pancreas
  • Glucose-responsive insulin (“smart insulin”)
  • Modification of the immune system (blocking, balancing, and/or retraining)

Again, sounds reasonable, right? Some of these practical cures are beginning to look like they may not make the 2025 timeframe cut-off, but you never know, right?

Every year, JDCA issues a report that tells potential donors which “practical cures” are more likely to pull ahead. Here are the 2014 “Potential Practical Cure Solutions,” found in the JDCA State of the Cure report. (2015 hasn’t been published yet, but expect it in the fall as in previous years) – and I’m going to show you where the funding is coming from. 

JDCA’s 2014 Potential Practical Cure Solutions

These solutions are broken down by type of “practical cure” and gives you the basic info into what it is, where this is in terms of “potential” release into the community and who is funding it. (For my own personal curiosity, I have delved deeper into some than others.) As a reminder, Part 1 is ONLY transplantation. Part 2 is the rest of the “practical cures.”

Transplantation

VC-01

(ViaCyte – a privately held, for profit company)

-San Diego, CA

What it is (straight from ViaCyte’s website):

ViaCyte’s innovative product is based on the differentiation of stem cells into pancreatic beta cell precursors (PEC-01™), with subcutaneous implantation in a retrievable and immune-protective encapsulation medical device (Encaptra® drug delivery system). Once implanted, the precursor cells mature into endocrine cells that secrete insulin and other hormones in a regulated manner to control blood glucose levels. ViaCyte’s goal is a product that can free patients with type 1 and type 2 diabetes from long-term insulin dependence.

Where it is in the pipeline of “practical cure”:

ViaCyte, Inc. announced in July 2014 that it had filed an Investigational New Drug application (IND) with the United States Food and Drug Administration (FDA) seeking to initiate a Phase 1/2 clinical trial in patients with type 1 diabetes, and in August 2014 the IND was accepted, allowing clinical testing to commence. This first-in-human trial will evaluate the safety and efficacy of ViaCyte’s VC-01™ product candidate, a stem cell-derived, encapsulated cell replacement therapy. ( Viacyte’s website)

They are in Phase I/II clinical trials at two locations, with an expected trial end date of August, 2017 with an estimated enrollment of 40 participants. Note: According to Wikipedia, “The percentage of Phase II trials that proceed to Phase III, as of 2008, is 18%.” Estimated commercialization date is unknown, but safe to say more than five years off.

Who is funding this “practical cure”?

JDCA forgets to include this:

JDRF is a major funder. 

ViaCyte has received substantial financial support from both the California Institute for Regenerative Medicine (CIRM) and JDRF. (Direct from the front page of ViaCyte website.)

Additional funders/partners include: Cellular Dynamics International, Invitrogen, now a part ofLife Technologies, Nestlé Institute of Health Sciences, Seventh Framework Programme, StemCell Technologies, Johnson & Johnson Development Corporation, Sanderling Ventures, Asset Management, BD Ventures LLC, Hospira, Inc., Portage Venture Partners, and The Clayton Foundation.

Note: What happens when/if it becomes commercially available? Janssen has signed an agreement with ViaCyte.

The agreement provides Janssen with a future right to evaluate a transaction related to the VC-01™ combination product that ViaCyte is developing for type 1 diabetes. This right will continue through the initial evaluation of clinical efficacy of VC-01.  ViaCyte received $20 million from Janssen and Johnson & Johnson Development Corporation (JJDC).  The payment included a rights fee and a note convertible into equity at a later date.  JJDC has been a long-standing investor in ViaCyte.


 DIABECELL

(Living Cell Technologies – a multinational for-profit in a joint venture with DOL)

– New Zealand, Japan

What it is:

DIABECELL is an insulin-producing cell product derived from pigs for the treatment of type 1 diabetes. These islet cells are self-regulating and efficiently secrete insulin in the patient’s body.

The treatment involves introducing encapsulated pig cells into the patient’s abdomen in a simple laparoscopic procedure. Living Cell Technologies’ unique proprietary encapsulation technology prevents the islet cells from being attacked by the patient’s immune system. This allows the use of cell therapies without the need for co-treatment with drugs that suppress the immune system, which often have negative side effects.

Where it is in the pipeline of “practical cure”: 

To date, a total of 46 patients have taken part in clinical trials of DIABECELL. The goals of these trials have been to find the optimal dose required for DIABECELL and to obtain early indication of its effectiveness in controlling type I diabetes. These trials showed that DIABECELL has the potential to significantly reduce the number of unaware hypoglycaemic events that people living with Type I diabetes experience, whilst also reducing their insulin dose and not experiencing a rise in HbA1c.

DOL is now preparing for a larger Phase II/III study to more fully determine the frequency and extent of this benefit.(Taken from Diatranz Otsuka Limited (DOL) website.)

The clinical trial results for DIABECELL are located here.

Highlights:

Phase I/IIa safety study (Russia) – Two out of the eight trial patients discontinued insulin injections for up to 32 weeks. (The assumption being that after 32 weeks, they resumed insulin injections.)

According to Seeking Alpha, an investment media company: “Mostly, the results are more modest involving decreased insulin injections and significant reduction in unaware hypoglycemic events.”

There are currently no clinical trials offered through Clinical Trials.gov (a global trial locator). 

Who is funding this “practical cure”?

LCT is an Australian for-profit company with headquarters and operations located in New Zealand. They have a joint venture with Diatranz Otsuka Limited (DOL). In June of 2015, DOL announced:

Diatranz Otsuka Limited (DOL), is to concentrate its research and development activities in supporting the development of DIABECELL® in the United States. As a consequence, research, development and manufacturing of DIABECELL in New Zealand will cease and there will be a reduction of staff at DOL’s headquarters in Auckland.

Otsuka Pharmaceutical Factory, Inc. (OPF), DOL’s 50% shareholder, is full sponsor and funder of the US program, operating under and exclusive license from DOL for US development and commercialisation of DIABECELL. Since securing the license, OPF has made positive progress, establishing a solid partnership framework for the US development.

DOL’s know-how, research to date and clinical experience in pig islet transplantation will be actively combined with OPF’s global drug development expertise and these partnerships to further strengthen and expedite the US development program.

This alignment of DOL’s expertise with the US program is part of DOL’s previously announced commitment to focus on the US development and FDA approval of DIABECELL. Once registered in the US, DOL retains a royalty free right to commercialise the FDA approved product in the rest of the world.

And of greater interest, Seeking Alpha says of DOL:

Otsuka is a formidable Japanese company with an established presence for its products in the US. Most notably its Abilify antipsychotic drug (shared with Bristol-Myers Squibb (NYSE:BMY)) generated $6.5 billion in US sales in 2013 (a top 10 US drug). To show it is no shrinking violet, Otsuka is involved in a fight to keep out generic versions of Abilify by suing the FDA!

Here is the press release from OPF.

None of these companies are non-profits and expressly state that they will sell and commercialize this product. They have not requested funding for cure research from the public. 


 

ßAir Bio-Artifical Pancreas

Beta-O2 Technologies

– Tel Aviv, Israel

What it is:

The ßAir Bio-artificial Pancreas is a macrocapsule that contains islets of Langerhans, cells from pancreatic regions of the body that contain hormone-producing beta-cells. The macrocapsule provides a fully isolated environment for the islets to thrive. The islets in the bio-artificial pancreas replace the function of the endocrine part of the pancreas; i.e., the sensing of the level of glucose in the blood and the regulation of the production of insulin and glucagon as needed.

ßAir has the potential to ‘normalize’ the lives of people living today with type 1 diabetes. How? Of greatest importance, the ßAir bio-artificial pancreas eliminates the need for frequent glucose testing and insulin injections. Immunosuppressive therapy, which has many side effects, is also not required.

Note: as the ßAir device contains ‘living’ cells, the patient must commit to keeping them healthy. Once every 24 hours, the patient needs to refill the air in the device using a replenishing device which includes a dedicated injector. This guarantees that the cells will have the requisite oxygen supply to thrive and perform their insulin and glucagon production role.

Replenishing the device is performed by injecting oxygen into one of two ports implanted under the skin. The replenishing device is very user friendly, requires minimal technical skills for operation, and has very few possibilities for incorrect operation. The replenishing procedure takes just about two minutes. An alarm will trigger if something has gone wrong. (Beta O2 Website)

Where it is in the pipeline of “practical cure”:

Phase I/II clinical trial being conducted in Sweden. Last verified in December, 2014 with a study completion date of March, 2016. 8 people are to be enrolled in this study. No results have been reported.

Who is funding this “practical cure”?

JDCA forgets to include this:

JDRF funded this company in 2014 to help get this clinical trial going.

Here’s the list of additional investors. As of this time, there has been no appeal to the general public for donations.


 

My Conclusion from Part 1:

For all the talk about JDRF not helping to fund a “practical cure,” I’m here to show you that JDRF is helping. Perhaps not to the extent that JDCA deems acceptable.

Who is JDCA to determine how much is acceptable?

Their “survey” of 1,000 donors in 2014, conducted by a third party (but where did they get their donor responses? Ask yourself that as they didn’t publicly state it in their report) claims that 88% of donors want their donations to go to “cure research.” The questions were targeted to invoke “cure” responses.

And before you jump on me saying that I’m a shill for JDRF (or ADA, who hasn’t been mentioned by me yet)… be very aware of this fact:

I donate to one of the “practical cures” that JDCA touts.

I’ve asked others for their help in funding this “practical cure.” I also donate to other diabetes non-profits, some big and some small, because I know (from my own thirty-two years of T1 diabetes) that while

I would sell everything I own to have a cure, crawl across a minefield strewn with broken glass to not have this horrible disease haunt me

in the meantime, we need support and research for the complications from this disease.

Every time a parent complains about a school issue in the US, every time a child gets a T1 peer or mentor, every time a teenager goes to a summer camp where diabetes is the norm, every time a family member views their loved one’s BG graph on a device from miles away… those donations matter, too. 

Conclusion: DO. YOUR. OWN. RESEARCH. 

More information is coming in Part 2, including JDCA’s practical cure solutions: devices (1) and immune system modifications(4).

Don’t be surprised. Or disappointed.

I was told in 1983 there would be a cure in five years. I’ve waited this long. We’ll all be waiting a little longer.

* I have chosen not to link to JDCA’s website. On purpose. They’re easy to Google if you want to see what I did. I’ve linked to the deep dive stuff.


 

Got Twitter? Simply click this link to share this post. 

If only everything was that easy.


 

5 Things I Learned from Meeting With My Congressman About Diabetes

washington-dc-7-1230576-639x852In the United States, we vote to have individuals represent us in Congress. Senators and representatives are “hired” by us to speak up and vote on important issues that impact our lives. Sounds like a cushy job, right? Show up, vote on a bill or two, then go home and talk to the people in your district that voted you in.

They wish.

Do you know how many bills and resolutions get introduced in Congress every two years? (We are currently in the 114th Congress, which began on January 6, 2015 and will run until January 5, 2017.) On average…about 12,000.

6,000 bills and resolutions per year. 

Some don’t get far. Some do. The 113th Congress enacted 296 laws and passed 663 resolutions in their two years. (Example of a resolution? S.Res. 564 (113th): A resolution honoring conservation on the centennial of the passenger pigeon extinction. Seriously.)

Legislation regarding diabetes is part of those 6,000 bills and resolutions each year. Just as I don’t expect medical professionals to understand every subtle nuance of diabetes technology, I don’t expect that my congressperson would be able to pull the diabetes bills currently on the Hill out of thin air. It’s madness. You try to remember 6,000 things!

That’s why, if you want your congressperson to be able to cosponsor or act on diabetes bills, after you send a message to your state’s reps in Congress, you can take another, more personal step… you can visit.

That’s what I did last week.

And this is what I learned about meeting with your congressperson about diabetes:

1. Be flexible with your appointment time.

I made this appointment to visit with him while he was back in the district back in March. It was changed about four times, as my representative had a limited time in the district this summer during break. I didn’t care. I wanted to meet with him and would have rearranged my schedule four more times to ensure we could meet. And once I was there, I waited. Just like a medical appointment. Just like waiting for a medical appointment, it was worth waiting for.

You might think it’s easier to get an appointment in DC, but in many cases, it’s not. It’s much easier to schedule a meeting when they are in their own districts. (And it’s cheaper for you, too!)

paper-pile-1238396-639x8502. Don’t show up unprepared.

You need to know what the bills numbers are, what they are asking to do, who the original sponsor is, and if you can, the financial impact of the bill on the U.S. public. Print the pertinent information out to give to the rep and/or staff person. It doesn’t have to be pretty; it just has to be accurate.(But don’t print out a ream of paper. It won’t get read. Give them all a few pages of the top info at most.)

I also printed out brief information regarding continuous glucose monitoring and the CGM Medicare Act of 2015, along with a list of his peers in our state and whether they had cosponsored any of the current bills on diabetes, and topped it off with the number of people in our state with diabetes, compared to the rest of the country. 

You are there to share why the congressperson should support this issue. Why usually includes a personal story – you, a family member, a friend… but keep it short. Very short. No life stories that take a year to tell. Practice or write down your short personal story and how it’s relevant to what you’re asking your congressperson to do.

3. Your congressperson has a staff. They are just as important as your congressperson.

While I wanted to speak directly with the congressman, I also knew that best laid plans don’t always happen. More importantly, the staff your congressperson has? Brilliant. They are the ones to advise, assist, and get a lot of the hard work in Congress done. They may look young, but they have the congressperson’s ear (and they are brilliant…). Be nice to staff. Super nice. Not only is it just polite, but they are the ones that can help you get your points about diabetes across.

4. Dilly dally and you lose. Get to the point.

Thank your congressperson and staff for their time right out of the gate. Then don’t waste a minute of it. 

Begin with your name and the bill (or two bills) that you want to talk about. (Don’t try to shove ALL the bills about diabetes into a meeting. You can’t cover all of them at once and you’re less likely to get a cosponsor for all of them.) Have the written information readily available. Some people like to look at the information as you go, while sometimes the staff take notes on the info you give.

Then give your quick personal story and how the passage of this particular bill will help people of diabetes. Answer any question that might come up about diabetes. Most people aren’t experts on diabetes. Even the simplest questions will help with their decisions to co-sponsor.

This meeting, I focused on two bills that I wanted my congressman to co-sponsor: the CGM Medicare Act of 2015 and the National Diabetes Clinical Care Commission Act. Why these two?

I won’t be eligible for Medicare for a long while, but the CGM Medicare bill is important to me because it will help make it easier for artificial pancreas technology to be covered (and because I have friends who NEED this bill because they are on Medicare and they have Type 1).

And 37 federal agencies trying to work together on diabetes issues isn’t an efficient way to work; the National Diabetes Clinical Care Commission Act will get them to communicate…

My meeting lasted less than ten minutes. He had others waiting (including one woman who came in with, I’m not kidding, two binders weighing five pounds each. Uh-oh.) and I had gotten my points across.

5. Thank them.

Send an email or a letter after your meeting, letting the staff and the congressperson know that you appreciated the meeting and the opportunity to share your thoughts.

Ask them once again to consider co-sponsoring the bill(s) and provide them with the bill number and the title of the bill (remember… 6,000 bills and resolutions each year!).

What happened after my meeting?

My congressman’s staff person sent me a quick email later that day, telling me that the he was cosponsoring both bills. The high that I felt was not from my blood sugars.

We’ve got a lot of Congress that needs to know about these bills and why they’re important to all of us. Some understand and some just don’t know. Congress represents the U.S. population – and 29 million of us have diabetes. We need them to understand that we need your help.

Where can you start if you want to meet your representative to talk about diabetes?

Do you know who your representatives for Congress are? Easy to find out…

Diabetes Patient Advocacy Coalition can help by inputting your zip code. (And if you haven’t sent an email to your rep, now’s the perfect time!)

Once you’ve got the names of your representatives, you can go to their websites and find out how to set a meeting. Sometimes you can call the office and sometimes you can send a meeting request via Internet.

I recommend that you arrange to have a meeting when the rep is home in the district, rather than DC.

I’d love to hear from you and your experiences on meeting with your representatives about diabetes. What questions did they have for you? Did they cosponsor? If they didn’t… what was the reason they gave? 

 

Hypoglycemia + Heart = Things You Need To Know ASAP

 

Does this illustration scare you?

It should.

2875462_zdc0061082810001

 

I first encountered this slide during an academic lecture given by Dr. Mikhail Kosiborod, MD when I attended the International Hospital Diabetes Meeting in May. He was sharing data about cardiovascular events and outcomes. (If you’re not an academic, the smart people begin to sound like Charlie Brown’s teachers after a while.) But when this illustration came onto the screen, I frantically scribbled the study’s authors down.

This slide was the first time I saw so plainly what was happening to me when I had a moderate hypoglycemic episode. (Dr. Kosiborod said that a “moderate” hypo was 57 mg/dl or less.) Not just the “I feel like I’m dizzy and not all here and let’s concentrate on something insignificant and is it hot in here?” reaction. This was what was going on inside without me feeling most of it. 

Complications are not always from high blood glucose levels

We all know the long-term implications of high blood sugars. It’s that same old “-Opathy” chant that everyone sings loudly: “Retinopathy-neuropathy-nephropathy” with the back-up singers humming: “Don’t forget about stroke and amputation and arteriosclerosis and…big finish, everyone! Gum disease!”

But with lows, it’s a quick ditty: “Unconciousness, seizure, death.” It’s not a chart-topper, but it can be #1 with a bullet if you’re hypoglycemic. When I had those times of “Whoa…let’s stand in the kitchen and daze off into space,” it didn’t feel like I was doing any damage to my body. Sure, I felt like my head had been run over by Gravedigger and I was treading in molasses for several hours after some lows, but I recovered. Or so I thought. Now?

I am setting myself up for long-term complications with repeated moderate low blood sugars. So are you. 

Here’s what happens (you can follow along with the slide, but I’ll break it down in terms we all understand):

Inflammation

Every moderate hypoglycemic reaction sends out wonderful proteins to increase inflammation in our body. (I’ll cut to the chase. We don’t want that.) They are:

Vascular endothelial growth factor (VEGF ), is a signal protein that helps to promote the growth of new blood vessels. We need VEGF as we grow in a womb (to create the blood vessels), after exercise or injury, and VEGF can help create new blood vessels when there is an obstruction. But, much like really good food, it’s only good in moderation. Too much of it (“overexpression”) can contribute to asthma, retinal problems, and  cancers.  The levels go up when we have a moderate hypoglycemic episode.

C-reactive protein (CRP) is a protein released in response to inflammation. Some of our organs, like colons, show a greater risk of cancer when they’re chronically inflamed. This lovely protein also raises our risk for heart disease, high blood pressure, and coronary artery disease.

Interleukin 6 (IL-6) is an interleukin (No, I’m not a medical professional or a biology whiz, so I had to look it up. Fancy word for protein) that does double duty: it promotes inflammation and can help with healing in certain situations. In this case, when we have a low, it’s under the inflammation category. And it gets busy.

“IL-6 stimulates the inflammatory and auto-immune processes in many diseases such as diabetes,[22]atherosclerosis,[23]depression,[24]Alzheimer’s Disease,[25]systemic lupus erythematosus,[26]multiple myeloma,[27]prostate cancer,[28]Behçet’s disease,[29] and rheumatoid arthritis.[30]” – Wikipedia

Endothelial Dysfunction

Vasoconstriction, the narrowing of blood vessels, is not something you want unless you need to stop a massive bleed. But, when you don’t need to stop a hemorrhage, it’s not often something super to have going on. Vasoconstriction raises blood pressure (which is why vasoconstrictor medications are given to people with low blood pressure) and can cause erectile dysfunction. You know what else causes vasoconstriction? Caffeine. Sigh.

Time for a breather. Here’s a picture of a bunny, because this stuff is pretty heavy. Warning, after the bunny, there are no more cute things. 

786081_33083752

Abnormal Blood Coagulation

If it’s a medical term and it starts with “abnormal”: uh-oh.

Factor VII is another protein in our body that helps the clotting process. Too little Factor VII = hemophilia. Too much Factor VII = clotting when there shouldn’t be. Moderate hypoglycemic episodes increase this protein in the body.

Neutrophils are white blood cells. When inflammation starts, neutrophils head towards the area of inflammation. Because our body is doing the inflammation dance when we’re having a moderate low, neutrophils show up for the party, too.

Platelet Activation – platelets help to staunch bleeding by clumping and clogging a blood vessel. Great for stopping bleeding, of course, but lousy when the result is thrombosis. We increase platelet activation when we’re low.

Sympathoadrenal Response

We release adrenaline, epinephrine and norepinephrine as our blood sugar sinks into the basement. It’s that “fight or flight” feeling; that “out-of-control and my heart is racing” feeling. It’s our body’s adrenal response to get us to do something.

When we have multiple hypos, we can developed a suppressed sympathoadrenal response – and that’s hypoglycemic unawareness. Clinicians talk about raising a target blood glucose level because a person with diabetes has hypo unawareness to retrain the body to have that adrenal response again.

But your nervous system also factors into play here. Your autonomic nervous system. Your heart is part of this system. A moderate hypo causes your heart to beat faster (“Thud-thud-thud”) and can cause long-term issues with the timing of your heart (arrhythmia). We’re making our hearts work harder.

It’s Not Over When You Think It’s Over

Your blood glucose level comes up and the hypo is over. But what happened to your body is not over. Not by a longshot. This is what I learned at the symposia at ADA’s 75th Scientific Sessions on Hypoglycemia.

And it’s this:

Vascular issues can last up to two days and blood coagulation issues for up to a week. 
Every moderate hypoglycemic episode builds up inflammation and coagulation responses in my body. One sucky hypo a week was not uncommon for me, even with a Dexcom.

What Am I Doing Now?

I’m doing everything to prevent a moderate or severe low blood sugar. The research I did shows me that I can change the way I react to my lows and help prevent these “issues” from happening.

My CGM is constantly on my body and I’ve set it to alarm at 80mg/dl so that I’m still in my right mind to look at it and take action if I need to do so. Has this helped?

Yes. 

Instead of alarming at 70, when I often tell myself that I’m invincible and that my blood sugar will go back up on its own (I’ve said this to myself a lot…Yes, I know. False.), I’m catching that low. It also has prevented the response of eating everything in the kitchen because I’m in “fight or flight” (or “stuff your face or pass out”) mode. My stress level is lower and I feel more in control.

And that is what this post is about… giving you the info and giving you the opportunity to help yourself, because while you can’t control having diabetes, you can control how you manage it. And hypos are not so innocent.

 

DPAC – Diabetes Patient Advocacy Coalition: Why?

Your day just got a little more exciting.

Why?

WE_ARE_DPAC-03

You can make a difference…in not just your life, but the lives of 29 million Americans and their families, friends, and employers.

Wait! Don’t sip your coffee and click to the next tab on your browser. (Sip your coffee and keep reading.)

If you are like I was (not too long ago), the thought of diabetes advocacy was simply this:

“Like I have time. Someone else will do all the hard work. Whatever.”

Now…

  • What if I told you that someone did all that hard work for you?
  • That advocating for yourself, people you love, heck… anyone in the U.S. with diabetes is now simple, easy, and quick?
  • One website to learn about the issues impacting people with diabetes being decided by lawmakers and governmental agencies and then tell them quickly how you feel?
  • A few clicks and you’re done, but you’ve helped the diabetes community and become a diabetes advocate?

Allow me to introduce the Diabetes Patient Advocacy Coalition (DPAC) and invite you to join me and others who care about our community.

WE_ARE_DPAC-01
Who is DPAC? You are. I am. We all are.

 

DPAC is a non-profit and non-partisan organization founded to provide united, simple, and effective advocacy opportunities for people impacted by diabetes for safety, quality and accessibility of care.

And there is no cost to be a part of it.

Sign up and take action immediately from the comfort of your keyboard. You won’t have to figure out who your government representatives are or how to contact them – it’s done for you. After you quickly learn why it’s important to let them know how you feel on a diabetes issue, you just… Click. Click. Done.

I don’t think I’ve ever met anyone who said: “I’d like to spend my day reading over proposed legislation and policy all day.” I certainly don’t. DPAC does that for you, boiling it down to the key points that you need to know.

Why?

Why bother to join? Have you ever been to a concert where the booming sound from the speakers drowns out a conversation you’re trying to have with your friend? One conversation gets lost sometimes.

Have you ever been to a concert where the singers asks the crowd to belt out the chorus of a song? When everyone is raising their voices as one… the whole audience is heard. That booming sound comes from the people in the crowd. We are that crowd.

The diabetes community deserves to be heard by our policymakers as a united voice. 

Why?

1434784_54457950Why join the Diabetes Patient Advocacy Coalition? I already do stuff with other diabetes organizations, you say. How is DPAC different, you say?

DPAC will keep policy makers’ attention on people with diabetes. Diabetes advocacy is like diabetes care; both are long-term processes with no quick fixes. 

Every diabetes organization has a mission; sometimes the mission and the issues that need to be addressed don’t align. Organizations may support one bill and not another – and that’s fine! Some wonderful diabetes organizations are constrained by their non-profit structure, preventing lobbying or the type of advocacy that pierces the heart of the matter.

DPAC is pro-diabetes, pro-existing organizations, pro-getting our diabetes voices heard by policymakers – and that’s the sole focus. Where there is already a movement by one wonderful organization, DPAC adds to the swell. Where an issue is not being given the spotlight, DPAC will shine the light. DPAC doesn’t want to re-invent the wheel; they want the wheel to go faster and gather steam.

If you’ve heard me mumbling over the past few months about a project that I’ve been working on… this is it, along with Bennet Dunlap and some pretty fantastic people and organizations. I’m all about making diabetes advocacy easy – and now it is.

Help raise a united diabetes voice and become part of DPAC. Come join me. 

 

#HealtheVoices15 – Peeking Into Other Patient Communities

When you are living with a chronic illness, your view on your particular disease can be laser focused, and that’s perfectly fine. We want to raise awareness, to share our stories, and to connect with others just like us. That’s what builds strong, impactful communities.

healthevoicesconferenceI learned this weekend at the Health eVoices conference that we must peek into other patient communities. Health eVoices was the brainchild of Janssen Pharmaceuticals, who paid for my travel and lodging expenses to have me (and about 60ish other patient advocates) attend and participate. They paid my travel and lodging, but not my opinion and thoughts about what happened there. These thoughts and opinions are what I want to share…

Our Community Is Not Unique

There were patient advocates from many communities: HIV/AIDS, Rheumatoid Arthritis, Psoriasis, IBD, Crohn’s, Colitis, Cancer, MS, Mental Illness, and Castleman. (More on Castleman later.) These individuals may not be the loudest or most prominent voice in each community, but as I keep saying: every voice matters. They speak from their hearts, their passion pours from every pore, and they want to bring their experiences out of the darkness and into the light where they can be a beacon to others.

We all want that. Each community wants to be heard, to be understood, and to be recognized – not just by the general public, but by decision makers and people who can make their lives easier. Our Diabetes Online Community is filled with powerful voices, but we aren’t unique; so many other patient communities have powerful voices, too. I spent a lot of time at Health eVoices thinking about how we can connect and learn from other communities (and I’m sure that I wasn’t the only one).

Learning From Others is Crucial

Dr. Zubin Damania is a name you probably wouldn’t recognize, but you might have heard of ZDoggMD. He was our keynote speaker on Saturday morning and while I was a little skeptical sitting down (“What the hell? A doctor turned comedian – comedian turned doctor yukking it up about healthcare? Please.” Obviously, four cups of coffee that morning did not make me feel particularly perky.), by the end of his talk, I was ready to throw my glucose meter on stage in tribute. (Don’t worry, I didn’t. Would have probably smacked him in the head and I hadn’t downloaded the data yet.)

He talked about how he got to where he is today, and how he uses humor to raise awareness through some hysterical (yet medically correct!) videos – and then about his vision of Health 3.0 through programs like Turntable Health. (50% of the patient exam rooms are actually consultation rooms where patients and medical teams can have conversations face-to-face in comfy armchairs.)

I will also always sing Usher’s “Yeah” if I have to give CPR because of ZDoggMD. So will you after you watch this (and I suggest you do!).

We also listened to Susannah Fox, a health and technology trendspotter (her term) and trendsetter (my term). She was our afternoon keynote speaker, and also talked about how far we’ve come from the paternalistic doctor-patient relationship to today’s savvier patient – and yet, we have so much further to go. While I typed from my laptop, checking my Twitter feed from my smartphone, she shared statistics about the inequality that still exists for patients who can’t really access the resources that are needed to take control of their own healthcare or help others in their family.

There were smaller sessions focusing on creating a living as a patient advocate (Chronicbabe is the bomb, sharing everything from her bag of tricks and being very open about how she translated her patient life into a living.), compassion fatigue with Dr. Koffman and the DOC’s Kerri Sparling, the legalities of blogging with Jimmy Nguyen, and tracking analytics with Tim Cigelske.

But it was the people sitting in the seats next to me during the sessions and meals that gave me the most to think about. As much as we complain about people not understanding diabetes, I found myself being one of “those people,” asking what is probably simple questions that individuals of that disease answer over and over and over. Like many of us in the Diabetes Online Community, they were gracious and responded with articulate and heartfelt answers. There wasn’t enough time to learn about all of these diseases, but learning about them is crucial.

We All Try To Make It Look Easy

I say this all the time with diabetes: our goal is to live long and healthy lives with as few complications as possible. It’s not just with diabetes. It’s every chronic health condition and every illness that impacts us on a long-term basis.

HandI watched as people checked blood sugars (“Go, diabetes tribe!”) at lunch tables, grabbed ice packs and heat packs from the relaxation room that Janssen so thoughtfully provided for their swollen joints, checked on family members via text and phone calls in hallways, swallowed pills during sessions. We all try to make it look easy to not be the victim, but this group of advocates made it easier to be open about our particular issues. I was surrounded by amazing strength and resilience, even when it’s difficult to move and function “normally.”

So, What’s Next?

What can we do, as communities, to help others? For me, my takeaway was this: I want to learn more about other patient communities and reach outside of the diabetes community to strengthen us – and by us, I mean patients – all patients. We all know someone, right? (You’re not a hermit.) There is someone in your circle of friends who is at risk for breast cancer, a blood clot, or other health condition. You may have met someone with Crohn’s or MS, but you might not have met someone who has Castleman Disease – because they don’t even know they have it yet.

Let’s learn from each other. Support each other. Find ways to connect and share and raise each other’s voices to build stronger patients – and in doing so, strengthen everyone’s community.

I learned this weekend about Castleman Disease from Raj, a medical student in Nashville who was diagnosed with this rare disease. What if I told you that most people are misdiagnosed? Wouldn’t you want to know a little more about it? I do, because you never know who you’ll meet that might need your support.

Here is just one resource about Castleman Disease for you to quickly learn about it. I challenge you to read it and then file it away in your big brain. I will be sharing more information about different chronic diseases so that we can all become better educated, raise awareness, and get our voices heard. What can you do today to do the same?

Hint: Share this post. Share information about Castleman. Ask someone about their own chronic illness – and learn from them. We are one patient community, made up of many patient communities… all brave, all eager to share, and all looking for support.