Category: Diabetes Advocacy

The Highland Cow Edition

Hi. I know. I know. Been a while.

I’m still here. By here, I mean on Earth. The last few months have been mind-bending, outrageous, quiet, loud, and contemplative – not in any particular order. My focus hasn’t been on writing. It’s been elsewhere, but I thought you might like a picture of a highland cow in all of its shaggy goodness and maybe hear from me.

Diabetes

I still have diabetes. (I understand that this may be shocking to some of you.) It’s still doing its thing and I’m still doing mine. Sometimes it’s a wonderful waltz of stable blood sugars and other times an awkward dip when I least expect it leads to a frightening tango where I lose my step.

I forget how to dance with this disease some days and it’s frustrating. You’ve been there, though, haven’t you?

Healthcare

I am still scared about the future of my health care. And those of every.single.person with diabetes in the United States who stands to lose protections due to bad genes. I read policy articles every morning and go from angry to distraught to outright “this is crazy-town-banana-pants” (this is a phrase uttered often in my house, courtesy of The Kid and John). I don’t have to pay to ride a roller coaster; I just have to read the latest news about ACA.

I channel those feelings into action through DPAC and ways that I can make a difference. I have met with Congressional staff, spoken with other organizations, and am looking forward to a few positive steps forward to protecting all of us with pre-existing conditions.

Silly Rabbit – Or Highland Cow…

I even asked friends if they wanted to participate in a March for Health that has grown into a group of amazing advocates who, on April 1, will speak up in cities around the country. But silly rabbit, you can’t do it… because something non-diabetes related is going on and I had to step back.

I ignored some health flags until I couldn’t ignore them anymore, so I’m waiting to hear back on bloodwork and diagnostics. It’s slowed my roll, so I’m stuck on the sidelines wondering when I can resume my rabble-rousing ways. When it comes to diabetes issues, I’m all “take it in stride,” but when it’s not diabetes, I feel helpless. (And the stories I could tell about trying to get an ultrasound scheduled would make you laugh… and cry.)

But Good Things!

I’m spending time with my favorite goofballs.

I just came back from our FOURTH Diabetes UnConference and we announced our fifth (October 13-15, 2017 in Alexandria, VA, y’all) which will be co-located with DiabetesSisters’ Weekend for Women conference.

DPAC will be part of Children With Diabetes Friends for Life in Anaheim, Orlando, and Falls Church, helping spread the goodness of advocacy. I love what CWD does and thrilled that DPAC can be involved.

And… there’s more, but my lips are sealed at this time. Good things! Happy things!

So, I’m here. Still here. Still have things to say but just not a lot of time to say them. And that’s OK, right?

 

#DiabetesAccessMatters – Share Your Story

Tell it.Now.-2Everyone has a story to tell.

Our lives are a collection of stories. Some are silly and happy, others filled with heartbreak and sorrow, and some flow with frustration and anger. These stories may be short and sweet or long with plot twists and abrupt endings. Whether we share them or not, we have stories to tell.

For people impacted by diabetes, we have stories that resonate within our community. Stories of hypoglycemic reactions or DKA, mentors and supporters in our healthcare system, and stories of access to the technology, drugs, and care that keeps us alive.

We want the diabetes access stories, because they matter.

By we, I mean the diabetes community. Last week, diaTribe’s Adam Brown and Kelly Close gathered a group of individual advocates and diabetes advocacy organizations on a call, prompted by the recent decision by United Health Care to restrict access of insulin pumps for adult members. While the conversation began with the decision, it quickly became a discussion about overall access… not just insulin pumps.

And from that call, it’s clear that while we all have access stories, there was not one place to house them all. We needed that, so Diabetes Patient Advocacy Coalition has stepped up to collect our stories to share with the public, including the healthcare community and policy makers. By providing these stories, we can build a plan to connect patient access issues and solutions that include our community. (I’m a big fan of “nothing about us without us” and having a seat at every table that makes decisions about our community.) 

Why #DiabetesAccessMatters NOW?

I’ve seen comments in the community that range from: “I’ve been talking about restrictive access to diabetes supplies for years and no one seems to listen!” to “Why did insulin pumps get people screaming and not meters or insulin?”

Here’s my take:

  • If you are one advocate or one organization, you’re not going to make much noise. Sorry to burst that bubble, but hell, I know this first hand. It takes a united front across several diabetes organizations and several advocates to impact change. There just hasn’t been that unified commitment groundswell until now.
  • It’s always been about access. We individually mount campaigns within our individual insurance plans for overrides on the amount of strips. We individually ask our healthcare team to appeal a decision on the type of insulin insurance will cover. We individually spend hours, days, months building cases for Medicare coverage for CGM. We have the tools and technology now to build a unified front.
  • The tipping point was insulin pumps, but the issue is access. It could have been meters or insulin or any aspect of treatment. Perhaps it should have been something else (we’ve tried in the past to raise the access alarm), but we’ve morphed quickly from #MyPumpMyChoice to #DiabetesAccessMatters because it’s about more than insulin pumps.

Why is DPAC Collecting The Stories?

NYC-2Because DPAC represents all individuals impacted by diabetes: Type 1, Type 2, MODY, Gestational and families of people with diabetes.

We work with ALL diabetes organizations that may specialize in one or two types of diabetes (i.e. JDRF is a wonderful organization, but they represent only Type 1 PWD.), to amplify the voice of the patient. The diaTribe Foundation is a 501(c)(3) and cannot use the stories for lobbying policymakers; DPAC can. (DPAC is a 501(c)(4) non-profit and the big difference is political lobbying.)

But the stories are for all organizations and advocates to use.

Your story will be shared across the community.

Your story will be used to show the frustrations and roadblocks to access and choice.

Your story becomes part of the larger story we share with insurance companies and policymakers.

Your story is worth telling.

Because everyone has a story to tell.

Tell yours. 

If You Do One Thing Besides Diabetes Today, Let It Be This: #SuspendBidding

If you do one thing besides diabetes today (which is a lot all by itself), please take a moment to click on this:

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Why should you do this? Why does it matter to you?

A few clicks can help suspend the Competitive Bidding Program, which was Medicare’s less than brilliant plan to save Medicare money by asking suppliers of diabetes testing supplies to bid for the privilege of selling test supplies to beneficiaries. What happened? Sure, the cost of strips went down… and so did the number of suppliers, the types of supplies offered (think: the cheapest on the market aren’t always the most accurate) and the ways to get the supplies were changed.

What increased? Costs to beneficiaries, hospital stays, and unnecessary deaths.

Despite warnings by other government agencies and organizations, the Centers of Medicare & Medicaid stuck their fingers in their ears and hummed: “We can’t hear you.”

But we can hum louder. And we can prevent needless deaths and disruption of access to diabetes supplies.

This directly impacts 11 million Americans on Medicare and indirectly impacts ALL of us. Your child or spouse or friend or coworker will someone be on Medicare and find themselves with restrictive access. But thinking ahead? It’s a slippery slope – first Medicare, then Medicaid, then private insurance companies decide that if Medicare and Medicaid are doing this, they can, too. The US Healthcare system is not saving money; exactly the opposite.

How can you help?

Click this pretty image:

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Tell Congress to suspend bidding of the Competitive Bidding Program immediately until there is a congressional oversight hearing to prove that not a single person with diabetes is being harmed by this program. (Hint: There is scientific proof that people with diabetes are being harmed.)

Want more facts and ways to share these facts? Head on over to: www.diabetespac.org/suspendbidding

 

Want pretty pictures to share on social media? Download these:

DPAC_Insta_3.31-01-150x150 DPAC_Insta_3.31-02-150x150 DPAC_Insta_3.31-05-150x150DPAC_Insta_3.31-03-150x150

 

 

 

 

 

Want a handy-dandy infographic to share? Here:

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So, in between checking blood glucose levels, deciding what to eat and how many carbs is in that meal, taking insulin or medication, fighting with insurance companies and staying healthy, please do just one more thing today and help spread the facts about #suspendbidding (and take action!).

It will probably be the easiest thing you will do today.

Thank you.

Bloodborne Infections from Diabetes Supplies? Yep. You read that right.

biohazard-3-1307153-640x480The longer I have diabetes, the more I learn about how we, as a community, have a lot to learn.

If you’ve ever been a patient at a hospital or a health clinic, you know that the goal is to send you home healthier than when you arrived.

Unfortunately, it doesn’t always happen and PWDs are more susceptible. It’s not just blood glucose levels we need to worry about while we’re under a medical team’s care. We also have to worry about bloodborne virus transmissions. I didn’t know  until I started to do some research. What I found shocked me – and I’m sure it will shock you as well.

Hepatitis B

Hepatitis B is a bloodborne infection that can cause serious, deadly issues (think liver cancer or cirrhosis). It can be transmitted a number of ways, including sharing of needles or blood glucose testing equipment.

Hepatitis B Virus (HBV) can survive outside the body at least 7 days and still be capable of causing infection. Think shared blood glucose testing equipment. Anywhere. Are you sure that the health care professional has washed his/her hands before putting on those gloves? Did you see them disinfect the BG meter? Are they using a single use lancet? Did an infected person’s blood land on the cart, then transferred blood to the new pair of gloves the team member just put on when he/she picked up the meter and moved the cart?

Even worse? Think about your kids letting a friend use a lancet device “just for fun.” Sadly, even kids can have Hepatitis B.

When you start to think about all the ways this virus can be transmitted, you might begin to feel sick to your stomach. (That’s one of the symptoms, by the way, but many of the symptoms are “run of the mill” when you have diabetes.)

But where it’s happening most often is long-term care facilities. And these are preventable.

Between 2008 – 2014, there have been 23 reported outbreaks, 175 outbreak-associated cases, >10,700 persons notified for screening. 17 of the outbreaks occurred in long-term care facilities, with at least 129 outbreak-associated cases of HBV and approximately 1,600 at- risk persons notified for screening. What should worry you is this next statistic:

82% (14/17) of the outbreaks were associated with infection control breaks during assisted monitoring of blood glucose (AMBG). (http://www.cdc.gov/hepatitis/statistics/healthcareoutbreaktable.htm)

There have also been cases of Hepatitis B and Hepatitis C transmissions at hemodialysis clinics (and if you think that’s not diabetes related, think of how many of us may be on dialysis for kidney disease) and home healthcare agencies.

It’s not like nurses or doctors think: “How can I hurt patients today?” But these outbreaks are PREVENTABLE. How? By following proper infection protocol policies and training healthcare professionals and patients to not share needles or lancing devices (and a few more steps).

Now, I’m sure you’re thinking: “Why should I care about this?” Simple.

Someday, it could be you.

Or someone you love.

And if we don’t ensure that these infection risks are mitigated, then who will?

What You Can Do

DPAC_ASKanEXPERT_infectionJoin the online presentation of DPAC’s Ask The Expert presentation on Tuesday, January 26th at 12pm.

Diabetes Patient Advocacy Coalition (DPAC) went straight to the CDC and they’re pleased to have a passionate expert to share her thoughts and what we, as the patient community, can do.

Dr. Pamela Allweiss, MD, MPH, Medical Officer for the Division of Diabetes Translation at the Centers for Disease Control and Prevention (CDC) will discuss the risks of virus transmission in healthcare settings (hospitals, clinics, and long-term care facilities) in the United States.

Healthcare-associated infections (HAI) are a serious threat to even the healthiest patients; people with diabetes are at higher risk than the general population. Did you know that there have been outbreaks of Hepatitis B in healthcare settings because of improper infection protocol and diabetes supplies?

During this presentation, you will have an opportunity to learn more about why this is happening in our healthcare system, ask questions, and discover how to mitigate these risks and ways to engage your state policymakers to enforce infection control protocols to ensure your safety.

Register by clicking here. Even if you can’t attend the live presentation, you can still send questions to info [at] diabetespac.org ahead of time and get a link to the recording after the presentation ends.

We’ve got enough to worry about. Let’s work to worry about one.less.thing.

 

CBP + Diabetes = Disaster

This is short and sweet and strictly to the point.

hands-talking-1311915-640x480People with diabetes on Medicare in the United States are on the front lines of a disaster: the Competitive Bidding Program (CBP) for diabetes testing supplies. Medicare thought it was a great way to save money and after a pilot program in nine test markets, gave it a thumbs up for safety and penny-pinching.

Except…. they’re wrong. It’s not safe and it’s not cost-effective and it’s killing people with diabetes, sending them to the hospital more than ever before, and costing the U.S. healthcare system (and patients) more money. However, they refuse to admit that, telling Congress that everything is hunky-dory. There is proof now showing their pants are on fire. We, as a community, need to help them put that fire out.

The Diabetes Patient Advocacy Coalition is holding a presentation on Wednesday, December 15th at 1pm Eastern with Dr. Gary Puckrein, Ph.D, CEO and President of the National Minority Quality Forum to share the results of the study (which are scary) and then discussing what needs to happen.

It’s Wednesday at 1pm Eastern and DPAC is inviting you to join. Click here and register (and it’s a Go To Webinar program, so you can watch it on your phone or computer or tablet…).

Why is it important for you to attend?

Even if you are not Medicare eligible, there are repercussions to this program. Medicaid insurance programs often follow what Medicare is doing and then… commercial insurance programs follow suit.

You will be impacted – if not now, then soon, regardless of your age.

Find out how to stop this program before it’s too late. 

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