Access

Guest Post: Laddie Lindahl on #DiabetesAccessMatters

We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Laddie Lindhal of TestGuess and Go,  gives her thoughts and comments about access by sharing her story.


img_12271I have had Type 1 diabetes since 1976. When I was diagnosed there was no home blood glucose monitoring and I took 1 injection of insulin per day. My chances for a long healthy life were minimal and complications such as blindness, amputation, and kidney disease were seen as almost inevitable.

Today I am 64 years old. I have gray hair and am stiff from arthritis, but my eyes are fine. My body has bruises and rashes from pump and CGM sites, but I have no numbness in my feet and my kidney function is fine. I rarely have a day without lows requiring glucose tabs, but I have not needed my husband to fetch emergency orange juice since starting the Dexcom G4 in 2012. My lab tests are good and my cardiac function tests are excellent.

So what happened?

Hard work paid off. Lucky genes probably helped. But what is most important is that I had ACCESS.

ACCESS

ACCESS to medical professionals who learned through the Diabetes Control and Complications Trial (DCCT) that controlling blood sugar results in better health for people with Type 1 diabetes.

ACCESS to new and improved insulin products as they were brought to market.

ACCESS to the newest technologies which began with home BG meters in the early 1980’s and expanded to insulin pumps and continuous glucose monitors (CGM) in later years.

ACCESS to education about how to optimally manage my diabetes.

ACCESS to social support through the DOC (Diabetes Online Community).

Along with access, I had CHOICE.

CHOICE

When my internal medicine doctor was unqualified to prescribe a pump, I CHOSE to switch to an endocrinologist.

After experimenting to prove that the blood glucose monitor I was using was unreliable, I CHOSE to switch brands to a meter which provided more consistent results.

When my endocrinologist and I agreed that my diabetes could be better managed with an insulin pump as opposed to injections, I investigated my options and CHOSE the pump that I believed would give me the best results.

When my doctor prescribed a CGM to combat my hypo-unawareness and extreme lows, I CHOSE to give it a try.

After a few years of failure with the CGM brand that I selected, my doctor and I worked together and CHOSE the competing brand.

I am incredibly lucky to have always had good insurance. I have had access and I have had choice. Many years ago my insurance was provided as one of my husband’s work benefits. The cost to us was minimal. Today I pay huge insurance premiums, but I still have access to the medications and durable medical equipment (pump and CGM) that my endocrinologist and I choose.

An insurance company is in business to make money and does not have a license to practice medicine. Once I pay my premiums, access and choice should be in my hands and those of my medical team. The idea that UnitedHealthCare has the right to change its policies on insulin pumps mid-year and mid-contract is wrong. Big players in the game making deals to reduce competition and limit choice should not be allowed.

How do I prove that ACCESS and CHOICE have made a difference in my life with diabetes?

I look in the mirror.


access_™ 612x300If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.

#DiabetesAccessMatters – Your Access Stories Matter

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Diabetes is complex.

Access shouldn’t be.

Access to the appropriate care is critical to living successfully with diabetes. The best practice is individualized diabetes care programs, so what is appropriate may vary too. Our community’s stories reflect this.

We asked people with diabetes to tell their access stories. What they’ve written is powerful and shows that no matter what type of diabetes, what type of treatment plan, our community shares this in common: issues with accessing the medications, devices, and care that their medical team has prescribed.

 

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Our Community’s Access Stories

Here are some excerpts from these stories, offered up as testaments to the issue of access in the diabetes community:

Riva G.

I have had type 1 diabetes 44 years since the age of 18. I have seen diabetes drugs and devices blossom so that people can have the best individualized therapy helping patients enormously to manage their diabetes. And now, it is all going away.

How can we have moved so far forward to now going backward?

 

Chris S.

Nobody knows my life better than me. So, for an insurance company to dictate and tell me what my best options are is outrageous.

I once ended up in the Emergency Room because the brand of insulin I was using was changed by the insurance company. The two brands are similar, but they are different at the same time. The amount of insulin used from one brand varies from the amount I need from the other.

Because of this force switched from the insurance company, my insulin ratios were off and sent me to the emergency room due to a high blood sugar level that could have left me in a coma.
All because the insurance company dictated what insulin I had to use.

Phyllis K.

Several years ago my pharmacy benefit manager Express Scripts informed me the blood glucose strips I had been using were no longer covered. The preferred strips/brand were One Touch. For me, One Touch meters consistently had me at higher blood glucose level, which meant I ended up have un-necessary low blood sugar due to treating a high I didn’t have. My doctor was able to submit an authorization letter and the strips, and I was able to get them, but at double the cost of what the preferred brand were.

2-3 years ago, Express Scripts determined they were not going to cover Novolog insulin, only Humalog insulin.

Just this year, I tried to fill a prescription for Victoza (also Novo-Nordisk). My doctor submitted an appeal for it, and it was rejected since Express Scripts does not cover anything by NovoNordisk.
Living with diabetes is hard. We are told to reduce stress, yet dealing with all of the insurance hassles is VERY stressful. Some things end up being covered with a fight, at a much higher price. Some end up not being covered at all and as such, a company that is not familiar with me, or my specific health issues plays doctor by mandating what medications, devices they will cover.

Clayton M.

Our 7 year old daughter was diagnosed in 2012. We have been using a CGM since early 2014. Since then it’s been a constant battle with our insurance company to have her CGM sensors covered.

It is mind-boggling that insurance companies issue these denials and make us jump through these hoops in order to obtain coverage on what is truly a life-changing and life-saving product.

Allison C.

Last year my insurance changed again and I was told I could no longer use the insulin I had been on for 8 years. I was required to use Humalog, even though I had issues with high blood sugar when using it after being diagnosed. Because it had been so many years, the insurance required me to use it anyway for 3 months to prove that it does not work for me. My A1C increased by 0.5 from 6.5 to 7.0 in those 3 months of using Humalog instead of Novolog. Instead of the insurance just giving me the insulin I was used to, they made me suffer from high blood sugar for 3 months that negatively impacted my health.

I currently am able to access all of the treatment medications and devices I need but every insurance change brings a new battle and I am left in limbo until the insurance company makes a decision. If my doctor and I feel that a medication or treatment device is working for me and improving my health, then that is what I should be given. A company that knows nothing about my health should not have a say in what devices or medications I use. I should also not have to prove to them that a medication is not effective for me and risk the potential side effects of such a trial.

Kim H.

My husband is a diabetic for over 30 years and considered “brittle”. Uncontrolled. He had 4 car accidents due to low blood sugars. His last accident was almost fatal. He is now disabled and I had to quit my job to stay at home to care for him.

We were told of a CGM when he was near coming home and we applied for it and got it through insurance. He has nocturnal lows almost every night without feeling them. He is now on Medicare and CGM’s are not covered. This is a life saving device for him. We are going to have to go through all appeals processes. His accident cost almost 3 million dollars and would NOT have happened IF he was wearing his Dexcom CGM. I can’t believe insurance, government, etc., can now mandate on top of our premiums we PAY what we use, if our doctors approve it!!

Phoebe N.

Why does an insurance company, who’s never met me, never given me medical advice, never had do deal with the decisions I make everyday, get to decide what’s best for me?

Stacey D.

 All insulins, glucose meters, insulin pumps, continuous glucose monitor systems, oral medications are NOT the same. And not everyone’s bodies react the same. People with diabetes should be able to choose what will keep them the most healthy and not be FORCED to use something that is deemed “better” than the rest.

Mark G.

I’m Type 2 on insulin. Endo prescribed pump to avoid regular hypos. UHC denied claim even upon peer review, saying pumps are only for HIGHS, CGMS are allowed for lows. One week later, they denied my renewal script for a CGM!

Three times, they insisted I “try” Humalog, even though I am ALLERGIC to it. So far, each of these denials has been “managed” though I had to pay for pump out-of-pocket, they cover supplies (so far) …

Still, I cringe with every new order and every new script… when will the next denial occur? My insurance has never cost more, and never been as difficult to use as it does now!

Joanne W.

I’ve had type 1 diabetes for 48 years. For about 8 years now I’ve been fortunate to have continuous glucose monitoring. I can confirm that hypoglycemia unawareness increases after 60–I’m 62 and increasingly unaware. That CGM keeps me informed and prompts me to take action; otherwise there’s a risk of seizure, unconsciousness and death.

I now dread the time when I have to rely on Medicare, which doesn’t cover CGM. It feels like punishment for taking care of myself all these years.

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Over 29 million Americans (and their families) live with diabetes. Each of them have their own treatment plan, created with their healthcare team to ensure healthy outcomes. There are hundreds of diabetes medications currently available and several devices on the market to assist in ensuring daily life with diabetes is manageable.

Restricting access, whether through restrictive contracts with insurance companies and pharmacy benefit managers, endless appeals processes that can take months or years, or prohibitive prescription costs, does not help those who need it most: the patient. By restricting access, care prescribed by those who know the patient best: the healthcare team, is negated and swept aside.

One size does not fit all when it comes to diabetes care. Our community knows this. It’s time for the rest of the United States to know this as well.

What Can You Do Right Now?

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  1. Share your story about what you and your family must do to keep healthy with diabetes, despite access issues.
  2. Join for free as a DPAC Insider so as the community builds an action plan (using the stories you have shared!), you’ll be the first to know.
  3. Share this post with your community using the share links below. 

 

 

Guest Post: Scott Estrin on #DiabetesAccessMatters

We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Scott, advocate blogger at Rolling in the D,  gives his thoughts and comments about access by sharing his story.


image1Last year, I tried (unsuccessfully) to upgrade to a new insulin pump/CGM combination. My insurer was known for denying such requests as they were deemed “experimental”, but I believed to have sufficient justification so I pursued trying to obtain the device.

Pump Denial

My first battle was with the manufacturer itself, who knew that this claim would be denied and didn’t want to participate in the battle – I was encouraged not to fight it and to simply buy the pump outright, in all cash. I refused, and instructed the representative to submit the authorization-request to my insurance. A month goes by, and I found out that the representative ignored my wishes and did NOT submit it, because she knew it would be denied; it seemed she couldn’t be bothered with the hassle.

After finally getting the authorization-request submitted, I got a denial in the mail, as expected. The denial letter instructed me how I could appeal, and separately how I could obtain information used in which to reach the conclusion of a denial. The appeal would have been rather useless without knowing the basis of the denial, so I made that request. After months went by without a response, I attempted, numerous times, to call my insurance company. I was transferred to fast-busies and disconnections, and referred to call incorrect phone numbers.

Eventually, I had to choose the automated options to identify myself as a healthcare provider, and then to plead with the representative not to transfer me back to the black hole I had been in previously. Eventually, after re-sending my request, I got the information in the mail.

The basis for the denial was rather weak.  My endocrinologist chose not to participate in the appeal-process. His role is to practice medicine, not to process insurance appeals. I could accept his reasoning, and knew that I could formulate a strong appeal on my own. I rebutted it, point-by-point, in a nine page letter with documentation to back up each one of my assertions.

Appeal with Published Data

My appeal was based on quantifiable fact and written, published data — not on pleas or emotion. I was denied again, for the same indefensible reason. But by this time, I’d had enough. The process was so time-consuming and mentally draining, that I chose not to continue with the appeal process.

I felt defeated, knowing that “the system” won; however the relief I felt at finally closing the book on my appeal-process counterbalanced that feeling of defeat. Fortunately, during this time I had found an alternate product that made me equally, if not more, happy. Next time, I may not have that alternative. That is why I am telling this story.

Doctors are trained to prescribe medical treatments. Insurers aren’t. When insurers contradict the professional, trained opinions of the professionals who provide care, they threaten the health and well-being of their clients. That is not acceptable and the practice has to be stopped.


Scott has been living with Type 1 diabetes for 35 years. Described by his friends as “always thinking”, he constantly seeks to understand why things are the way they are and how they can be made better. Though diabetes is a part of his life, he does not let himself become consumed by it; that honor goes to his wife, his two sons, and his love for ice hockey, of which he is a youth-team coach. Scott and his family live in New Jersey.


access_™ 612x300If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.

May Thank You Tweets

Say Thanks!

DPACActNowBubbleIt is good manners to say thanks when an elected officials co-sponsor bills that help people with diabetes. It also helps them know we are paying attention.

Here’s a list of people who have recently co-sponsored a bill this month. To say “Thank You.” Just click to Thanks! Tweet.

Want to see more than just May’s bill co-sponsors? Click ACT NOW DPAC for our scorecard to tweet any or all the cosponsors.

Diabetes Clinical Care Commission Act

  • Thanks! Sen. Vitter, David [R-LA] 5/23/2016
  • Thanks! Sen. Menendez, Robert [D-NJ] 5/19/2016
  • Thanks! Rep. Walden, Greg [R-OR-2] 5/19/2016
  • Thanks! Rep. Blum, Rod [R-IA-1] 5/18/2016

Medicare CGM Access Bill

  • Thanks! Rep. Butterfield, G. K. [D-NC-1] 05/25/2016
  • Thanks! Rep. Boustany, Charles W., Jr. [R-LA-3] 05/24/2016
  • Thanks! Sen. Udall, Tom [D-NM] 05/23/2016
  • Thanks! Sen. Burr, Richard [R-NC] 5/12/2016
  • Thanks! Rep. Posey, Bill [R-FL-8] 5/10/2016
  • Thanks! Rep. Cook, Paul [R-CA-8] 5/10/2016
  • Thanks! Rep. Richmond, Cedric L. [D-LA-2] 5/10/2016
  • Thanks! Sen. Carper, Thomas R. [D-DE] 05/16/2016

Diabetes Education

  • Thanks! Rep. Maloney, Carolyn B. [D-NY-12] 05/17/2016

Guest Post: Asha Brown on #DiabetesAccessMatters

We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Asha Brown, founder of We Are Diabetes gives her thoughts and comments about access by sharing her story.


Asha Brown Diabetes Access MattersI’ve been a human pincushion (aka type one diabetic) since I was five years old. The sight of needles and blood is such a common theme in my life that sometimes it’s shocking to see a non-diabetic person get so uneasy when they see me plunge a syringe into my torso to give my body the synthetic hormone insulin, which keeps me alive.

Being entirely responsible for manually preventing yourself from dying each day is a lot to ask of a person. There’s a lot to calculate and plan. No matter how adept a type one diabetic is at knowing their insulin to carb ratio, how their body responds to exercise and stress etc., there are always factors outside of our control that spiral our diabetes management out of control. Day in and day out we do the very best we can to manage a disease that tries to kill us, and try to find stability despite a long list of factors that constantly keep us out of balance.

Getting the supplies that we need to STAY ALIVE should not be one of the factors on that list.

Over the 26 years I’ve lived with type one diabetes (and other autoimmune diseases I was diagnosed with as a result of T1D) the most stressful factor I’ve had to continuously deal with is my insurance denying or restricting medications that are essential to my diabetes management.

Insurance Denying Access

Most recently I had to fight to have my 24 hour insulin distributed to me in the proper amounts. My insurance wanted me to make one bottle last for 3 months. There are a number of reasons why this was a ridiculous restriction:

  1. Insulin loses its effectiveness/expires once the bottle has been open for 30 days
  2. I need more 24 hour insulin to KEEP ME ALIVE than is included in one bottle.
  3. The USA is not a third world country rationing toilet paper and reusing tinfoil due to a shortage of everything that exists. There’s plenty of Lantus to go around. I spent hours on the phone for over a week before this issue was rectified and I was “allowed” to have the very necessary 3 bottles of insulin I need to last me for 90 days.

I have been through four different situations of medications being denied, year after year. Every time this happens I go through the appeals process, and I get my doctors support with all the proper paperwork, and eventually get my medication.

The amount of superfluous hoops I am forced to jump through just to get the medications I need causes unbelievable (and unnecessary) stress for me, on top of the stress of living with a demanding life long chronic illness. I didn’t get a choice in being diagnosed with type one diabetes, but I should be allowed to have the choice of how I manage it.


access_™ 612x300If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.

Quality Diabetes Education

ACT NOW: Save lives and reduce cost with broader access to educators.

One policy step to reducing the burden of diabetes, improving health outcomes and lowering costs is improved access to diabetes education. Diabetes education can be enhanced by increasing the pool of providers and bringing the benefit in line with new recommendations on critical times for diabetes education. Ask your Congress Members to support Access to Quality Diabetes Education Act of 2015 (S. 1345 / HR 1726).

It is one policy step to reducing the burden of diabetes, improving health outcomes and lowering costs is improved access to diabetes education. Diabetes education can be enhanced by increasing the pool of providers and bringing the benefit in line with new recommendations on critical times for diabetes education

Diabetes self-management education (DSME) is reimbursable under Medicare. However, Certified Diabetes Educators are not recognized as a provider by the Centers for Medicare and Medicaid. Diabetes education is an underutilized benefit. There is evidence that diabetes education can save health care costs over time.

Living with successfully diabetes requires complex lifestyle changes, monitoring and in many cases medication. Education is key to making healthy changes. Encouraging referrals, more cost-effective providers and broader educational interventions at critical times can help change the lives of 30 million Americans with diabetes.

Sadly researchers at the American Diabetes Association’s (ADA) 2015 annual meeting in Boston reported that diabetes education underused. The ADA researchers said in a statement that “for people to learn the skills necessary to be effective self-managers, DSME is critical in laying the foundation with ongoing support to maintain gains made during education. Despite proven benefits and general acceptance, the numbers of patients who are referred to and receive DSME are disappointingly small.”

“It’s horrifying, what we’re not doing in education.” said David Marrero, Ph.D., ADA president of healthcare and education and professor of medicine at the Indiana University School of Medicine in Indianapolis.

The new recommendation identifies four critical times when a patient may need consultation with a diabetes educator:
* At diagnosis
* On an annual basis
* When new complicating factors influence self-management, such as a new health problem
* When there is a transition in care

Continuous Glucose Monitoring Enhances Quality Care

ACT NOW: Ask for Medicare Coverage for CGM

Access to quality diabetes care products through private insurance and Medicare is critical to living successfully with diabetes and minimizing costly complications. Join other DPAC Patient Voices in calling for access Continuous Glucose Monitoring (CGM) and coverage processes that provide patients with the tools they need.

The cornerstone of diabetes self-management is making timely changes to manage blood glucose levels. To do that, people need access to quality blood glucose testing supplies, medications, and devices.

Medicare CGM Access Act of 2015 (S804/HR1427) are bipartisan companion bills were introduced by Senators Collins and Shaheen and Representatives Reed, DeGette and Whitfield.

Continuous Glucose Monitoring is life-saving 21-century technology that can help prevent costly hospitalization of American seniors with diabetes. CGM can save lives – and money; the average cost of an emergency room visit and subsequent hospital admission for a low blood sugar is $17,000. Medicare should join the vast majority of private insurance providers in making CGM accessible by Medicare patients. Seniors with diabetes should not lose this powerful tool when they join Medicare.

The ‘Medicare CGM Access Act of 2015’ would resolve this coverage oversight by Medicare and help pave the way for coverage of the next generation of CGM-related technologies, such as Artificial Pancreas (AP) systems.

We believe that well-controlled diabetes is the leading cause of nothing. The high cost of diabetes complications can be minimized through the immediate investment in safe and accurate tools of good care.

We believe that all patients, regardless of age or socioeconomic status, should have access to devices, including continuous glucose monitors (CGM) that can prevent immediate and long-term diabetes complications.

ACT NOW to ask your members of Congress to co-sponsor the Medicare CGM Access Act of 2015, or if one of your elected officials already has co-sponsored the bill, send them a thank you. (Don’t worry,  we’ll do the work to find out if your members of Congress have co-sponsored or not!)

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