Wednesday, April 19, 2017

I'm Attending The Lilly Diabetes Insulin Access Workshop

Thanks I'm flying out to Indianapolis this afternoon to attend the Lilly Diabetes Insulin Access Workshop at Lilly HQ on Thursday, April 20th.
Diabetes Advocates from the DOC will be sitting in a room with Lilly discussing insulin access and affordability, literal and figurative costs of diabetes, insurance, Lilly's insulin access programs and the likes there of. 

Every advocate sitting in that room has advocated and fought for people with diabetes,  are people with living with diabetes, or who love someone with diabetes. 
There will be a lot of listening and note taking , not sure how much I'll be tweeting, but I 
I encourage you to use your voices and follow/participate in the discussion on twitter 
and tweet your questions and concerns to the Diabetes Advocates in attendance.

FTR: I'm not sure what the "official" hashtag is, but several of the Diabetes Advocates have been using the hashtag, #insulinprices - stay tuned and more to follow re: hashtags.

The twitter handles of confirmed attendees are listed below and in no particular order, as is Lilly Diabetes.
Sidebar: I wasn't provided an "official list of attendees," (I asked several times,) and will add to the list as I get more attendee confirmations. 


Full Disclosure: Lilly is paying for my transportation, hotel, expenses, and milage - which they should and I'm glad they are. 
And unlike #45, I'm all about transparency - with that being said, my opinions are mine and I'm not afraid to state them, LOUDLY and OFTEN. 

Monday, April 17, 2017

My NYC #MarchforHealth Experience!

Apple issues with my technology at every turn as of late - sorry for the delay!

I attended the NYC March for Health on April 1, 2017 and to say it was incredibly inspiring was an understatement
The weather was harsh, the passions were high, and I was blown away by what I was witnessing. 
Patients, Health care providers, unions, health non-profits, NY city and state agencies came together for our health care rights, and  shared stories that inspired me to fight harder for affordable health care access for all. 

I was one the people who was asked to share their health (in my case, t1 diabetes,) and ACA stories.
The clip above is me sharing my story, (shoutout to my friend Ron for taking the video,) it's short and straight from the heart and my busted pancreas! 

I've also included a few photos from the stage. 

View from the stage
If you want to view some incredible photos from the NYC March for Health, click HERE and HERE. To read more about the NYC, March for Health, click HERE

Huge thanks to the march organizers Amanda, Erin, Leyla, Annette, and the March's Partners including, but not limited too; The Children’s Defense Fund, Committee of Interns and Residents (CIR), Diabulimia Helpline, Doctors Council SEIU, Doctors for America – New York, Empire State Medical Association (ESMA, NMA in NY), Health Alliance International, Health Care for All New York, Health Over Profit, Manhattan Central Medical Society (MCMS, NMA in Manhattan), Metro New York Health Care for All, National Physicians Alliance (NPA), New York Immigration Coalition, New York State Nurses Association, NYC Coalition to Dismantle Racism in the Health System, Organizing for Action – New York (OFA-NY), People of Color Against Aids Network (POCAAN), People’s Health Movement, Physicians for a National Health Program NY Metro Chapter, Progressive Doctors, Raising Women’s Voices-NY, Rise & Resist, The Betes Organization, Universal Health Care Action Network (UHCAN), Universities Allied for Essential Medicines, Whole Washington. 
The sign says so much! 
View from the stage and in color~

Tuesday, April 4, 2017

Diabetes, Weekend Trips - And Playing The Role of House Guest ~

You know those "perfectly put together" women you see at airports or on the train? 
You know the ones - matching everything; hair coiffed so perfectly that they most have gone for a blowout before they went to the airport/train station, strutting around in 4 inch high heels like they were comfy slippers, while pulling an a perfect little compact travel bag with wheels behind them. 
These women normally top off their look by wearing sunglasses, a ridiculously small handbag slung over their shoulder, and a smug expression.

Of course you do. 
For the record, that's not me and 20 bucks says they don't have diabetes - and if they do, someone else is in charge of carrying their D-Stash.

I attended The March for Health - NYC,  over the weekend (post to follow very soon,) and arrived at Penn Station on Friday night with my "it's time to get a new carry-on suitcase with wheels," and my fuchsia pink knapsack containing not only my phone, wallet, and phone charger because diabetes, but my personal D pharmacy to boot.
Yep, my fuchsia  knapsack was filled with with extra infusions sets; needles, insulin, my meter, test strips/ backup test strips, a spare pump battery, 2 juice-boxes, 3 Kind bars, and 1 bottle of Tropical Fruit flavored glucose tabs. 

Not to mention a wind-up ticking clock to help my friends train their new puppy.
But.... I digress. 

I love visiting friends around the globe and in my own backyard, so when my travel involves staying over, I come prepared. 
When playing the role of house guest, I never want to impose or for my busted pancreas status to be the cause of worry for my hosts - I make sure that I have everything I need, including juice-boxes and glucose tabs on my person/next to my guest bed stand.

Bottom Line: I don’t want my diabetes to be a burden to others, nor do I don’t want to feel like one. 

Since I was diagnosed back in “77,” I’ve been cognizant of how others perceived my diabetes. I remember my mom discussing snack options and the likes there of, for after school play dates and sleepovers with my friends parents.
Some parents were great, some parents, not so much, and some, not at all - and those reactions stick with you as kid with diabetes - and as an adult. 

And it’s those reactions (and being my mother’s daughter,) that have turned me into a self sufficient house guest re: my diabetes... and an over-zealous packer. 
Sidebar: Kunik women require shoe options. 

And as much as l long to be one of those stylish weekend travellers who look like they've stepped off the pages of Town & Country and who can fit EVERYTHING, (diabetes and shoe option wise,) into one smart little travel bag with wheels - and with Audrey Hepburn flare, it’s never going to happen - and that's OK. 
Because not having those things will will never stop me from traveling -and neither will my busted pancreas!

Wednesday, March 29, 2017

The High Costs of Diabetes Kills: RIP, Shane Patrick Boyle

Shane Patrick Boyle has been on my mind and in my heart since last Thursday. 
I've reached out to Shane's cousin on Facebook, but haven't heard from her yet - she's got a lot on her plate. 
Still, I wanted to post the story so that we could help Shane's family - and to prevent this from happening to another person. 
Nobody should die in the United States, or in any other country because they lack the funds to pay for insulin, or don't have access to insulin.
#DiabetesAccessMatters #insulin4all
This is Shane Patrick Boyle.
RIP: Shane Patrick Boyle
This is the link to Shane’s Obituary.
Cause of death: He couldn't afford his insulin.
From all accounts, Shane Patrick Boyle was a gifted writer and graphic artist, founder of ZineFest, Houstona good son and brother, a kind and gentle man with tremendous talent and a giving heart - and his artwork reflected his kind and gentle spirit.

Update: 3/30/17 - This afternoon, Shane's cousin Hannah sent me 
the above illustration and a snapshot
 of his facebook profile below.
She felt both were true representations of Shane's spirit and talent.

The family feels that Shane, who always fought for the underdog,
 would be honored to leave a legacy of motivating others to fight for 
change ~ 

This is the link to Shane’s Go-Fund-Me for insulin, which has now become his G0-Fund-Me account for funeral expenses - for Shane and his mother. 

Shane passed on March 18th, and according to his Go-Fund-Me Page, "Shane died because he was trying to stretch out his life saving insulin to make it last longer."
Shane moved back home to help take care of his sick mom, Judith (she died on March 11th,) and his healthcare was put on the line. 
Because he moved, Shane lost his Rx benefits, was between doctors and needed insulin for his type 1 diabetes. Shane was waiting for his ACA status to be approved and was stretching out his insulin until he had enough money to pay for his insulin, and see a doctor to prescribe prescriptions. 

I didn't know Shane in real life or online, but I do know that In 2017, no one should die because they can't afford insulin or diabetes supplies- Not a single person.  

In 2017, nobody in the United States should have to set up a GoFundMe account for insulin, but to date, 9,242 people have. 
UPDATE: As of 4/10/17, Go-Fund-Me has 6017 campaigns for the search term,"diabetes," and 6017 campaigns for the search term, "insulin."  

My heart breaks for Shane and his family and I am so fucking angry!

Most of us are are so lucky to be in the know, to have a computer or smart phone at our fingertips, to have others who understand, can relate, and can help us when we are need of diabetes supplies. 

I don't know if Shane was aware (-and even if he was, he might not have had the funds to do so,) that he could purchase Regular, NPH, and 70/30 at Walmart and sans RX and for $25 per bottle.
Yes, antiquated insulins and far from efficient, but they most likely would have kept him alive.  
Sidebar: Starting in May, CVS will offer  Novolin R and Novolin N and Novolin 70/30 for $25, per 10ml bottle and without a prescription. 

I don’t know if Shane knew of Insulin Companies assistance programs (Lilly, NovoNordisk, Sanofi), and other diabetes related assistance programs.
But those lifesaving programs require paperwork and time to be vetted.

Unfortunately, Shane ran out of time.  

Shane's insulin was off patent, still cost a fortune without insurance - and in many cases with insurance.
Insulin prices have increased exponentially and across the board, every quarter since 2002.

Insurance Companies and the middlemen increase the price of insulins and other drugs  because they see dollar signs and people with diabetes pay the price, financially and in some cases, with their lives. 

Around the world people with diabetes are dying because they don't have access to life saving insulin.

In the United States of America, people with diabetes are dying because while they have access to insulin at every drugstore, they can't afford the cost of the the insulin they require to stay alive.
Click HERE for a breakdown of diabetes costs around the globe.
It's beyond wrong - it’s fucked up - and it must stop.

I don’t know if Shane was aware that the Diabetes Online Community existed or that there were various facebook groups like the non-profit, Type 1 Diabetics Pay It Forward, where people with diabetes give/trade with those in need, or organizations like Insulin4All - that could have helped him. 
I take it Shane didn't know that the HelpAround app for people with diabetes existed, 
but I wish with all my heart that he did
I know that if the DOC knew of Shane's struggle, we would have done our best to help Shane because we’ve all been where Shane stood. 
All  of us have received and given help to other people with diabetes in need.

When I learned of Shane's fate, I cried myself to sleep - I also sent some of my contacts at insulin companies, insurance companies, and la makers links to Shane’s go-fund-me page - and his obituary. 
And I suggest you do the same. 

Join The American Diabetes Association and sign the petition to make insulin affordable.
Advocate and call your lawmakers - your voice matters, so make use it and make noise!
 Help Shane’s family pay for his funeral (any funds leftover will go towards a diabetes charity for those who struggled like Shane
Attend the national/your local March For Health on April 1
I’ll be marching in NYC and I'm one of the speakers and I will be sharing Shane's story. 
All of us need to fight like hell and put a stop to this madness!

In a few weeks I'll be attending an Insulin Access Workshop held by Lilly Diabetes.  
A group of Diabetes Advocates will be sitting across the table from Pharma - and you can be damn sure that I/we will telling Shane's story to those at the table!

Tuesday, March 28, 2017

Sometimes My Body Screams Like A Wild Howler Monkey For Carbs

I listened to my body, and at that moment my body was screaming like a wild Howler monkey for carbs!

The other night I wanted to make a low carb Italian chicken dinner (consisting of grilled chicken, red sauce an mozzarella, sitting on top a big, fat, delicious salad. 
I wasn't necessarily trying to eat low carb, I was just craving chicken, cheesy, red sauce and big salad goodness! 

But I didn’t give into my cravings because my body had other ideas. 
My blood sugar had been running on the lower side of normal for most of the day.
Not super low, but low enough to require  lower temporary basal rate, blood sugars in the 90s and grazing throughout the day. And when it came time to make my dinner, my blood sugar was 74. 
Clearly this chick needed some carbs as substanence  - and the thought of dealing with more lows after dinner wasn’t appealing.
Grilled Swiss cheese on a big slice of Jewish rye and with a side of broccoli it was - and I was OK with that. 

Sidebar: Who the hell isn't Ok with grilled cheese? 
Grilled cheese was a quick and delicious solution. I was hungry and bordering on hangry, and the grilled Italian chicken breast salad would have to wait for a more solid blood sugar day.

Diabetes requires us to go with the flow, be diligent and continually make split second decisions. 
Some are easy, some not - but we do it, because we have to.
Yes indeed, I I enjoyed my grilled cheese sammi and broccoli.
I didn’t spike, and my blood sugar was 160 before bed. 
I corrected even though my gut and the days blood sugars were telling me not to, and I ended up sucking down a juice box at 4am. 
The next few days were juice box free and I finally made me delicious low carb grilled Italian chicken salad. 

Yep, going with the flow... embracing my inner howler monkey calling for carbs... not to mention the juice box on my nightstand~  

Wednesday, March 22, 2017

TODAY, Call Your Rep In Congress & Tell Them To Vote "NO" Re: The AHCA, #RyanCare/#Trumpcare

Thank you AARP for the above image! 
I have to speak up, because today our future healthcare is at stake and tomorrow congress votes. Today is the day to call your rep in Congress and tell them to vote NO re: repealing and replacing ACA with The American Health Care Act - the republican replacement plan for ACA.
FTR: If you don't like ACA/Obamacare, I get it - but the Republican Replacement Plan is horrible! AHCA brings back high risk pools - devastating for those of us with pre-existing conditions; adds an age tax to anyone over the age of 52, includes drastic cuts to medicaid, which so many adults and children with diabetes/ other illnesses require to stay healthy, and includes a Health Care Savings Account option that is absolutely worthless to anyone with a pre-existing condition. Diabetes wise, those accounts be would be depleted ASAP to pay for insulin; doctor's appointments, test-strips, pump supplies, RX's, and would cover only the bare minimum. 
AHCA also tax credits that only benefit the very wealthy, who most likely will not even be on an AHCA plan. Replacing ACA with a plan that increases costs and guarantees 52 million people will be without healthcare by 2026, (which isn't that far away,) IS NOT what's best for the American people.   

If lawmakers want to replace ACA/ObamaCare, then replace it with something better for the American people, NOT WORSE. 
Tomorrow Congress votes on AHCA and today I’m speaking up - and I hope you do too! 

Today is the day to make your voice heard - today is the day to call your Rep in Congress and tell them to vote NO re: (AHCA) The American Health Care Act, the Republican Replacement Plan for ACA. 

Whether you’re a fan of ACA/Obamacare or not, the Republican Replacement plan - AHCA is a horrific substitute that will cause 52 million Americans to be uninsured by 2026. 
The AHCA DOES NOT lower costs, it will increase them - whether you are insured by the plan or not.
The AHCA DOES NOT improve insurance, it negatively impacts everyone's health insurance across the board. 
The AHCA DOES NOT improve healthcare - it is detrimental to healthcare.
AHCA tax credits disproportionately benefit the wealthy - those who most likely would not be on The AHCA; the proposed medicaid cuts put 30 million children (including children with diabetes and children on state CHIP programs,) at risk, not to mention increased costs to the elderly, the economy, and adults with diabetes on medicaid and off, will be astronomical. 
No matter what side of the fence you sit, the American people deserve better than the The American Health Care Act.
Click HERE and send your message to Congress re: the Republicans AHCA bill  via DPAC. 
The Diabetes Patient Advocacy Coalition, (DPAC,) is a wonderful resource for the DOC and beyond, with excellent tips re: talking with those that are on the fence in congress - GIVE A READ
Call and tweet your Reps in Congress today, (and thanks to DPAC for making it easy,) because tomorrow Congress votes on AHCA.

FTR: When I called my congressman this morning, I told his aide that if my rep voted for AHCA, AKA., #ryancare/#trumpcare, (name association to the plan is important - use it,) 
I wouldn’t be voting for him on November 18th, 2018 - Election Day. 

Today, use your voice and use it loudly, because tomorrow Congress votes on our health!

Thursday, March 16, 2017

Magnificent Black Bean, Sweet Potato, Veggie, Lime Soup

I love to cook and I love to make soup - especially when it’s cold and nasty out. 
After 5 days of cold and 2 days of cold and nasty, you know I made soup last night! 
And I made one of my favs - Black bean, sweet potato, veggie, and lime soup. 
This recipe is a combo of several different ones I’ve found over the years - It’s a meal and it’s truly magnificent! 

After I made/ate my Magnificent BBSPVL soup, I posted its magnificence on facebook  - and a lot of my friends asked for the recipe.
So, here it is. 
Sidebar: I don’t use carrots in this recipe... usually. But In the past, and when I’ve had a couple raw carrots that needed to be used sooner rather than later, I’ve added them - you can’t go wrong either way - the choice is yours.

 Magnificent Black Bean, Sweet Potato, Veggie, Lime Soup - ENJOY  

1 Tablespoon of extra virgin olive oil - maybe a little more?? I don't know because I usually don't measure the oil - I should but I don't. I use enough to get a good sautée going without the veggies drowning in oil

1 large onion chopped - I prefer vidalia onion - but whatever you have on hand works

2 large sticks of celery, chopped - FYI: Celery has salt, which means you don’t need a super amount of salt for this soup

1 sweet pepper, any color your want - I used yellow, because that's was what was in my fridge

Jalapeno - The amount depends on you - but I HIGHLY suggest you start slowly and use sparingly. A little bit goes a long way. Start out with a quarter jala, chopped
If you prefer another hot pepper, go for it! 
Also, you can use substitute sriracha sauce, instead - it's awesome!  
And if you don’t like hot peppers, - DON”T USE THEM

2 cloves of garlic, chopped

1- 2 tsp. ground coriander (less or more depending on your taste) 

1 -2 tsp. ground cumin (less or more - depends on your taste)

1/4 tsp of turmeric 

1/4+ tsp cracked black pepper

1/2 tsp of oregano 

 1 tsp of apple cider vinegar

Himalayans sea salt to taste  - your salt requirements may vary

2 bay leaves - 3 if they are small leaves

1 large sweet potato, peeled, cut into half and or one inch chunks

2 cans (15 oz. can) black beans, rinsed and drained (I use Goya low sodium beans) 

4 cups vegetable or chicken stock (bought or homemade - your choice)

juice from 1/2 a small lime fresh

Chopped Cilantro and Italian Parsley - as much as you want
Diced avocado or guacamole  

1. Rinse of your beans until there is no more foam, and leave in the colander until ready to use. 

2. Peel and chop your sweet potato (you can use a food processor to chop,) into half and or one inch chunks and put aside until needed.
Sidebar: You can buy sweet potatoes already diced -Target, Trader Joe’s and other grocers sell them that way in and they can usually be found in the fresh refrigerated veggie section. 

3. Chop your onion (I prefer sweet onions,) and celery, saute both in olive oil, on medium low for 7 or 8 minutes. 
4. Immediately add 1/2 of the cumin, coriander, sea salt and oregano to the onion/celery mix and stir baby, stir. 

While the onion/celery are sauteing, chop your sweet pepper, your garlic, and a very little bit of your jalapeno. Add five minutes later, add along with the garlic 

6. Wait a few minutes, add the 4 cups of veggie broth, black beans, bay leaves, (bay leaves help re: remove the musicality from the beans,) and chopped sweet potato, the remainder of the spices to the mix. Stir and simmer on medium for thirty minutes. Occasionally stirring things up. 
Sidebar: Visually, look for gentle bubbling and foam from the beans. 

7. After 30 minutes, check to see if the sweet potatoes are soft, if so fish out the bay leaves, ASAP. 

8. Then, take a slotted spoon and removed 3 drained cups of beans and veggies, put aside in an empty bowl. 

Take an immersion blender ( IF you don't have one, get one - it will change your life,) and place it right in the soup pot and blend. 
If you don’t have an immersion blender, you can use a large measuring cup to remove the contents in the pot into a regular blender. That option gets messy and the soup is hot - BE CAREFUL!

10. After blending, add the 3 cups of strained veggies and beans back in the pot, squeeze 1/2 a small lime into the soup, add the tsp of apple cider vinegar, give everything a good stir and simmer on low for 10 minutes. 

11. Chop the fresh cilantro and Italian parsley and wait. 

Lastly, pour some delicious soup in the bowl, sprinkle copious amounts of chopped cilantro, Italian parsley, some more spicy pepper deliciousness, avocado or guacamole and enjoy!

FYI: If you make the soup too spicy - add another teaspoon of apple cider vinegar and a tsp or two of honey to the soup pot - trust me, it works! 

As far as carbs and fiber counts - I don’t have an exact number. 
I usually bolus between 28 and 35 grams of carbs for this soup, because I find I need more coverage with legume based soups -your diabetes may vary~ 

**The ingredients I used to make this soup were dairy and gluten free.