Blog

Special Diabetes Program

Special Diabetes Programs (SDP) and Advocacy

Special-Diabetes-Program-Funding_032816_UpdateThe Special Diabetes Programs, or SDP for short, are important responses to diabetes by the federal government. These programs seek to prevent, treat, and cure diabetes. They were renewed as part of a large bill in April 2015 for two years – and of course, we want them to be renewed again in 2017.

Two significant parts of the SDP are the Special Diabetes Program for Indians (SDPI) at the Indian Health Service (IHS) and the Special Statutory Funding Program for Type 1 Diabetes Research (SDP-type1) at the National Institutes of Health (NIH).

The Special Diabetes Program for Indians was created in 1997 as part of the Balanced Budget Act. It  addresses the epidemic of diabetes in American Indian and Alaska Native communities. These communities have the highest prevalence of diabetes in the United States at almost three times the national average. In some cases over 50% of adults have been diagnosed diabetes andAmerican Indian and Alaska Native are 170% more likely to die from diabetes.

The Program for Type 1 Diabetes provides research into stopping the autoimmune attacks at the core of type 1, studying the regeneration of beta cells, artificial pancreas and more. SDPI bring additional resources to native communities where the incidence of diabetes is significantly higher.

The Special Diabetes Programs together translate research to care to combat diabetes including:

  • – Researching genetic factor contributing to diabetes.
  • – Studying environmental that contribute to the disease.
  • – Paths to preserve beta cell function.
  • – New ways to monitor glucose and deliver insulin.
  • – Behavioral approaches to slow and prevent type 2 diabetes.
  • – Investigating the cellular and molecular pathways of diabetes development.
  • – Clinical trials of new diabetes treatments and medications.

The Special Diabetes Programs were approved as part of a larger piece of legislation, H.R. 2 the Medicare Access and CHIP Reauthorization Act of 2015. The bill passed with bipartisan support, 92 to 8 in the senate  and 392 to 37 in the House of Representatives.

(Curious as to who voted FOR and who vote AGAINST the Special Diabetes Programs in 2015? Click here.)DPACActNowBubble

In 2017, there will be another push for funding for SDP, but why wait until then? This is an election year, so it is a great time to send a message of thanks to those who cast a #Vote4Diabetes.

Take action, ACT NOW to say thank you – and remind your representatives in Congress that until diabetes is cured, we need federal research funding!

 

Special Diabetes Program

How a Bill Becomes Lost in the Shuffle

capitol-hill-dpacjpgYou may remember the Schoolhouse Rock song about how a bill becomes a law, but in case you don’t, we’re going to share the steps.

Let’s outline the process of how a bill becomes a law using an example of a bill that impacts all people with diabetes – S.586 – National Diabetes Clinical Care Commission Act

It’s not easy to go from bill to law; it’s a detailed process. Along the way, it may get lost among potentially 6,000 other bills and resolutions that are created every single year. How can we make diabetes focused bills stand out?

Drafting of a Bill

The first step in the bill process is an idea. These ideas can come from a grassroots effort where individuals reach out to their local elected officials and ask them to support a specific idea.
Once the idea is brought to the attention of a representative, the bill is written and sponsored. It is important to have not only a sponsor, but as many co-sponsors as possible when introducing the bill to Congress.

S.586 – National Diabetes Clinical Care Commission Act was initially introduced by Sen. Jeanne Shaheen (D-NH) on February 26, 2015. The bill was introduced initially with 12 other co-sponsors. The bill currently (as of 3/10/2016) has 30 co-sponsors.

Submission of Bill

The bill is first submitted to the House of Representatives that begins with a number preceded with H.R.

In some instances, identical bills may be submitted in both the House and the Senate.

For example, an identical bill, H.R. 1192 was introduced in the House of Representatives on March 02, 2015 by Rep. Pete Olson (R-TX-22) and 53 original cosponsors. Currently, (as of 3/10/2016), H.R. 1192 has 178 co-sponsors.

Comittee and Subcomittees

The bill is then referred to a committee. The committee is comprised of Congressional representatives who are subject area experts. While here, the bill will go through reviews and revisions, if necessary, before it is decided to be sent back to the House floor. If the committee members need more insight or information, they have the opportunity to send the bill to a subcommittee where the bill is re-examined and additional experts are called in.

A majority of bills never make it out of the committee phase. A bill may  “die” because the committee could take a long time to review, table the bill (when a majority vote decides to suspend consideration of a bill), or the bill just simply loses its momentum and is forgotten about. 

This is another reason why it is important to continue to take actions in order to keep diabetes related bills in the conversations. The more you talk about it, the better. 

Mark-up of a Bill

During this time, additional revisions may be made to the bill. This revision phase is commonly known as a “mark-up” session. If there are a large amount of revisions and amendments to the initial proposed bill a new “clean bill” may be created.

This new clean bill will have its own, new number assigned to it and go through the same process again.

S. 586 was read twice and referred to the Senate Committee on Health, Education, Labor, and Pensions.

The bill is currently in the Mark Up phase.

H.R. 1192 was referred to the House Committee on Energy and Commerce initially. It was then referred to the Subcommittee on Health for consideration.

Once the bill is approved by the committee, it is reported to the House where it will be up for debate. During the debate phase, representatives will discuss pros and cons of the proposed bill.

Neither S. 586 or H.R. 1192 have reached this point. Which is why we need you to take action.

Voting on a Bill

Once final revisions are complete, the bill is ready to be voted on. If majority of representatives vote in favor of the bill, it is then referred to the Senate. There needs to be a simple majority of 218 out of 245 Representstives for the bill to move on.

Once the bill reaches the Senate, a similar process occurs to ensure that there is enough research, review and revisions put into the bill. After being voted on and passed by majority of the Senate, the bill will finally reach the President’s desk. There needs to be a simple majority of 51 out of 100 votes in favor in order to reach the President.

Presidential Options

The President then has three options for the proposed bill. Sign and pass the bill, veto the bill, or do nothing (also known as a pocket veto).

The bill then becomes a law if the President has approved it or a Presidential veto is overridden.

In order for a Presidential veto to be overridden there must be a minimum of 2/3 vote in both the House and the Senate.

As you can see, it’s a long drawn out process for a bill to become a law. During this time period, there are thousands of bills that may be passing through the desk of representatives and may get lost within a committee or subcommittee.

DPACActNowBubble

Take Action Now

It is important as citizens and advocates to keep diabetes related legislation at the forefront of your representatives minds. Continuing to call, write letters, tweet, etc. helps keep a diabetes bill from being lost in the shuffle. If enough voices are heard about a specific concern, the bill will stay front and center.

What can you do today to help ensure that a diabetes bill doesn’t get lost on its way? Take action on just ONE of the bills currently in Congress. Just click here and send a message to your representatives.

Ask An Expert: JDRF’s Dr. Aaron Kowalski, Ph.D and Cynthia Rice, MPP

DPAC_ASKanEXPERT-300x300It is an honor to have two prominent advocates for Type 1 diabetes join us for a special Ask An Expert on March 29th at 12pm Eastern.

If you’re unfamiliar with Dr. Aaron Kowalski and Cynthia Rice and the work they do at JDRF, we’d like to take a moment to share why we’re excited.

Dr. Aaron Kowalski

Diagnosed with Type 1 diabetes in 1984 (the second diagnosis in the family; his brother was diagnosed in 1977), Aaron was inspired to understand and change the world of diabetes through science. After obtaining a Ph.D in molecular genetics, he has become one of the world’s most celebrated experts in diabetes technologies, especially in the area of artificial pancreas.

At ease sharing information to both scientific and patient venues, he brings his multifaceted perspective as a scientist, advocate, and person with diabetes. When he’s not working tirelessly to change Type One into Type None, you’ll find him running (with 17 marathons under his belt!) to show the world that individuals with Type 1 can live without limits.

Dr. Kowalski is the Juvenile Diabetes Research Foundation’s first Chief Mission Officer and Vice-President of Research. He’ll share his thoughts and views on Type 1 diabetes policy advocacy and the role that patients can play in helping ensure our community remains healthy – and hopeful – for better therapies and  a future cure.

Cynthia Rice, MPP

Ms. Rice has spent her entire career advocating for a better America, including positions in the White House and Senate. Since 2005, her stellar accomplishments have benefited those with Type 1 diabetes.

Currently the Senior Vice-President of JDRF for Advocacy & Policy, her focus is JDRF advocacy to Congress, the executive branch, regulatory agencies, and health plans. She received her Masters in Public Policy from University of California, Berkeley and her bachelor’s degree from Harvard University.

She’s worked closely with Dr. Kowalski on accelerating artificial pancreas technology and we look forward to hearing her insights on the current state of Type 1 diabetes policy and what we can do to  advocate for our community.

Join DPAC, Dr. Kowalski, and Cynthia Rice on March 29 at 12pm Eastern by registering here.

Where Can I Learn About Diabetes Policy Advocacy?

DPAC BOOTCAMP FEATUREDiabetes Advocacy Boot Camp (DABC)

March 11, 2016 in Las Vegas

 

Join DPAC at the first face-to-face DABC (Diabetes Advocacy Boot Camp) and learn how to become an effective diabetes policy advocate – while having fun!

On Friday, March 11, 2016, the Diabetes Patient Advocacy Coalition will be in Las Vegas, Nevada at the Flamingo Las Vegas, holding a highly interactive session on diabetes policy advocacy. It is free and open to the public, but you will need to register using this link.

Why?

We recognized that no one is a born policy advocate. No one is an expert without learning the fundamentals of a topic (and that goes for diabetes, too!). Just as we are given guidance on how to manage our diabetes in order to become better versed in taking care of ourselves, we need to explore and learn from others about advocacy.

There isn’t currently a program for diabetes policy advocacy, so… we’ve created one.

This was something that we realized at DPAC; not only do you need an “easy button” for policy advocacy, but you need an “easy button” to learn about becoming a policy advocate. (We promise – no push ups!)

bennet-e1400791480274Advocating for yourself in healthcare situations or raising awareness (or funding) for diabetes is important. Policy advocacy is different, with it’s own vocabulary and rules. DPAC will help those interested in stepping into the world of diabetes policy advocacy and making sure policy makers know that 29 million Americans and their families need their help when it comes to diabetes issues.

What will DABC Cover?

During DABC, Bennet Dunlap will give a brief overview of what diabetes policy is, why it’s important to our community, and then how to talk with government representatives and their staff so that they’ll listen – and help us. You’ll learn how to share your story so that it’s personal to them. (And of course, there will be special guests!)

This is a highly interactive session. Come prepared to have fun and learn about how to be an effective policy advocate. Join Bennet and other passionate people who want to change the diabetes world on Friday, March 11, 2016 in Las Vegas.

(Can’t make it to Vegas for this DABC? We’ll be holding sessions this summer online and in person. Stay tuned!)

Special Diabetes Program

What is the Diabetes Caucus?

Special Diabetes ProgramDid you know that there is a Congressional Diabetes Caucus? In this brief introductory post, you’ll learn what it is, who is involved, and why it matters to the diabetes community.

What is a Caucus?

A caucus is made up of individuals that share common legislative goals and initiatives. The Diabetes Caucus is, therefore, a group of Congress members who share the common goal of supporting legislation to benefit people with diabetes.

Comprised of the House Diabetes Caucus and Senate Diabetes Caucus, the primary focus of the Diabetes Caucus:

“Is to educate members of Congress and their staff about diabetes and to support legislative activities that would improve diabetes research, education, and treatment” – The Congressional Diabetes Caucus

Within a year after it was formed in 1996, they were able to pass legislation to help increase the coverage of diabetes education and supplies from Medicare. There are over 300 members of the Diabetes Caucus, making it one of the largest caucuses in Congress.

Why Does It Matter?

There are currently five bills in the Senate and seven bills in the House that can be co-sponsored to help people with diabetes in the United States.  One out of three Diabetes Caucus members cosponsor zero of the bills listed on the DPAC Scorecard.

DPACActNowBubbleHere is a breakdown of the percentage of Diabetes Caucus members who cosponsor bills (as of February 2016):

  • Cosponsor None – 92 = 30%
  • Cosponsor 1 bills – 88 = 28%
  • Cosponsor 2 bills – 68 = 22%
  • Cosponsor 3 bills – 38 = 12%
  • Cosponsor 4 bills – 12 = 4%
  • Cosponsor 5 bills – 4 = 1%
  • Cosponsor 6 bills – 2 = 0.6%
  • Cosponsor 7 bills – 1 = 0.3%

There is work that needs to be done. It is important for all of us  to continue to write Congress, tweet them, and meet with them to inform them about the importance of these particular diabetes bills.

Key Diabetes Caucus Members

While there are over 300 members, here are the Chairs of the caucus.

Sen. Susan Collins (R-ME) – Senate Co-Chair

  • Supports Medicare CGM Access Act and National Diabetes Clinical Care Commission Act.
  • Sponsor of Protecting Access to Diabetes Supplies Act and Gestational Diabetes Act.

Sen. Jeanne Shaheen (D-NH) – Senate Co-Chair

  • Supports Medicare CGM Access Act and  National Diabetes Clinical Care Commission Act.
  • Sponsor of Protecting Access to Diabetes Supplies Act and Gestational Diabetes Act.

Rep. Diana DeGette (D-CO-1) – House Chair

  • Supports Medicare CGM Access Act, National Diabetes Clinical Care Commission Act, and Access to Quality Diabetes Education Act.
  • Sponsor of Medicare National Diabetes Prevention Program, Protecting Access to Diabetes Supplies Act, Medicare Prevention / Nutrition Education, and Eliminating Disparities in Diabetes.

Rep. Ed Whitfield (R-KY-1) – House Chair

  • Supports Medicare CGM Access Act, National Diabetes Clinical Care Commission Act, and Access to Quality Diabetes Education Act.
  • Sponsor of Protecting Access to Diabetes Supplies Act, Medicare Prevention / Nutrition Education, and Eliminating Disparities in Diabetes.

Rep. Xavier Becerra (D-CA-34) – House Vice Chair

  • Does not currently support the top diabetes related legislation.

Rep. Tom Reed (R-NY-23) – House Vice Chair

  • Supports Medicare CGM Access Act, National Diabetes Clinical Care Commission Act, and Access to Quality Diabetes Education Act.
  • Sponsor of Medicare National Diabetes Prevention Program and Protecting Access to Diabetes Supplies Act.

As you can see from above, not every Chair or Vice Chair is supporting or sponsoring all (or any) legislation that will benefit people with diabetes. This is a problem throughout the Diabetes Caucus. Members of the caucus are not up to date on issues that concern people with diabetes. We can do something to change this right now.

Are Your Elected Officials on the Diabetes Caucus?DPAC Scorecard

Are your representatives are members of the Diabetes Caucus? You can easily find that out by going to our DPAC Scorecard. At the top of the Scorecard, find the column titled “Diabetes Caucus Member” and then scroll down to your representatives.

If you need help finding out the names of your elected officials, no worries, we have a tool for that too! You can use our Elected Officials Lookup Tool. Just simply type in your zip code and click Act Now.

From the Scorecard, you can see if your elected officials are members of the Diabetes Caucus and if they have supported any of the diabetes Bills that will benefit our community.

If you see a “Please” in the column, that means they have not yet supported. Click on that link and it will automatically generate a tweet from you to be sent out to that elected official.

We also want to thank those that have supported legislation, so if you see a link that says “Thanks”, please go ahead and tweet a nice thank you to let them know how much you appreciate what they are doing for people with diabetes.

Whether your Congressional representatives are part of the Diabetes Caucus or not, please take a moment to let them know they need to support these bills, because they impact our diabetes community.

National Diabetes Clinical Care Commission Act

PrintImagine gathering 37 people in a room to work on a problem.

Each get a piece of paper with the name of a disease written at the top and special assignments for that person. Those assignments could be to raise awareness, build and implement a screening program for potential patients, provide funding for clinical programs, and decide what new programs should be developed.

Imagine now that while the 37 people could talk to each other and share their ideas, it’s not required. In fact, they don’t need to talk with each other at all, even if they have the same assignments. (And some of them do have the same assignments!) They leave the room and sit in their own offices, scattered throughout a city, creating their own programs, even if they overlap.

And then imagine that no one is in charge. 

emptyroomThat’s what is happening today with the 35 federal agencies that are working (not always together) with patients, practitioners, and payors of diabetes products, services, and programs.

The National Diabetes Clinical Care Commission Act of 2015 seeks to change this, putting a commission together for better diabetes care. It would assess existing programs, looking for overlaps and gaps, and advise on the overall care options for people with pre-diabetes, diabetes, and the conditions associated with diabetes.

Once enacted, it would create a commission of diabetes experts including medical professionals that treat patients with diabetes, diabetes patient advocates, and representatives from the federal agencies  involved in diabetes care and programs. This commission would be formed under the department of Health & Human Services (HHS).

Why does this bill need to pass?

One in three Medicare dollars is spent on people with diabetes. 35 agencies not coordinating. There’s a lot of work being duplicated and more that aren’t being done at all. There are currently no true patient representation. Patients should be at every table, advocating for access, safety, and quality of the services and programs those impacted with diabetes, now and in the future, should receive.

The Health Omnibus Programs Extension (HOPE) Act of 1988  (see H.R.2881 – National Commission on Acquired Immune Deficiency Syndrome Act, which was folded into the Hope Act of 1988) established an AIDS Commission. This commission provided insight, recommendations, and a targeted strategy for the AIDS epidemic. It was needed then.

It is needed now for diabetes. We need another commission for the diabetes epidemic. A generation ago, a commission for diabetes was created and from it, the DCCT and the concept of managed control revolutionized diabetes care. With a new generation of medications, devices, and innovations, it’s time to coordinate care again.

The National Diabetes Clinical Care Commission Act of 2015 would do this. Let your Congressional representative know this by taking action now with just a few clicks with DPAC.

 

Diabetes Advocacy in Pennsylvania

 

Safe at SchoolSafe_at_School

Thanks for advocating, Safe at school passed! One down more to go.

License Diabetes Educators

PrintAsk the State House to pass HB 1851 to protect people in the Commonwealth with diabetes by licensing professional diabetes educators. We have messages for people with diabetes to send asking for quality educators and for educators to ask for recognition of their profession.

Oh and a DPAC PA Tweet too.

 

Keep Kids Well

PrintType 1 is increasing yet there are still tragic undiagnosed cases. Ask your State Officials to follow the precedent set in North Carolina that promotes education on the symptoms of Type 1 Diabetes at children’s wellness visits.

Write State Officials to Keep Care Settings Infection Free

PrintAssisted blood glucose monitoring in long-term care facilities, clinic, and hospitals is sadly a primary source of blood-borne virus disease transmission. Between 1990 and 2008, there were 18 hepatitis B virus infection outbreaks in the United States that were associated with the improper use of blood glucose monitoring equipment. 147 people acquired hepatitis B. Six of those patients died.

Learn more by listening to our Ask An Expert session with Dr. Pamela Allweiss MD, MPH, on the Risk of Virus Transmission in Healthcare Settings Due to Diabetes Supplies

Unfortunately, preventable outbreaks are still occurring due to breaches in infection control policies. Recently an outbreak of Hepatitis B was attributed to improper assisted blood glucose monitoring in Pennsylvania.

DPAC Insiders – 1st Quarter, 2016

DPAC Insider 600x300

Do you know that you can look back and forward at the same time? That’s what we’re doing with our DPAC Insiders quarterly dialogues. Our first was recently held and we shared what our diabetes policy advocacy community has done together and what we are planning on spearheading in 2016.

If you missed the live presentation, you can watch the recording by clicking here. 

What DPAC Accomplished in 2015

DPAC officially launched the online portal for patient diabetes policy advocacy on June 1, 2015 and since then, our DPAC Insiders (if you’ve sent a message or joined, you’re one!) have taken 2,750 “Actions,” sending tweets and emails to elected representative on both a federal and state level.

We’ve helped push two bills forward: the CGM Medicare Act of 2015 and the National Diabetes Commission Clinical Care Act. (Still bills, not laws yet!)

We’ve raised our voices about the importance of enforcing infection control policies on a state level, as people with diabetes have endured preventable Hepatitis B outbreaks because of the sharing or improper disinfecting of diabetes testing supplies.

We created the DPAC Scorecard. DPACs Scorecard helps you see where U.S. Congress member stand on legislation that will help people with diabetes. With the Scorecard, you are able to simply click and tweet Congress.

What is DPAC’s Focus for 1st Quarter 2016?

CGM Medicare Act of 2015

Medicare should join the vast majority of private insurance providers in making CGM accessible by Medicare patients. American seniors, who are successfully managing insulin-dependant diabetes, should not lose this powerful tool when they join Medicare. This bill will also possibly help with artificial pancreas pathways and getting CGMs covered by Medicaid in all states.

The Medicare CGM Access Act added 27 House and 6 Senate co-sponsors in the first quarter (so far!) in 2016. We’re closer to getting this enacted, but we continue to need your help!

The Senate Bill and House Bill can be found by clicking the links.

Medicare Competitive Bidding

Speaking of Medicare, we are disturbed by the increased mortality, hospitalization, and patient costs with the CMS Competitive Bidding Program for diabetes supplies. Information from a comprehensive study has shown that CMS is ignoring the facts. You can take action and learn more.

National Diabetes Commission Clinical Care ActPrint

This bill coordinates the focus on diabetes activities and helps the federal government to better address the disease, in a fiscally responsible and effective manner. The act is budget neutral, and prior experience suggest this commission can have a significant positive impact on care. The National Diabetes Commission Clinical Care Act added 19 House and 3 Senate co-sponsors since January 1, 2016.

The Senate Bill and House Bill can be found by clicking the links.

Ask An Expert Series

DPAC has created a monthly Ask an Expert Series to provide professional inside looks into the most concerning problems related to diabetes. In January, our expert from the CDC shared important information on the Risk of Bloodborne Virus Transmission Due to Diabetes Supplies in Healthcare. In December, Dr. Gary Puckrein spoke on the findings of a white paper about CMS’s Diabetes Supplies Competitive Bidding Program.

We have two upcoming Ask an Expert presentations that you can sign up for now (simply click the images to register):

DPAC_ASKanEXPERT_AACE (1)                                         DPAC_ASKanEXPERT

 

DPAC BOOT CAMP 600x600Diabetes Advocacy Boot Camp

No one is expected to be an expert in diabetes policy advocacy just starting out. We will be offering you way to learn how to be an effective advocate through The DPAC Diabetes Advocacy Boot Camps (DABC’s). These will be held online and in real life. You can attend a DPAC DABC in person at:

The Diabetes UnConference Las Vegas – March 11, 2016

Friends For Life Falls Church, VA – April 9, 2016

 

What Will DPAC Do in 2nd Quarter of 2016?

DPAC District  Days

One of the responsibilities of being in Congress is to head home and speak to the people who live in your district. This is the best opportunity to schedule time with your elected officials to speak to them about diabetes related policy. We want you to get up close and personal, so we will provide you the tools to do so. Afterwards, we would love to hear your story in order to encourage more to do so as well.

How Do Candidates Feel About Diabetes?

It’s 2016. That means it’s an election year. DPAC will let you know how candidates feel about specific diabetes issues before you head out to the polls.

Online Resources for Advocates

DPAC will provide you the online resources you need as a diabetes policy dvocate. We will provide:DPACActNowBubble checklists, downloads, in-depth knowledge, and of course…. a little fun.

What Can You Do Right Now?

Become a DPAC Insider. Sign up now and then tell a friend or click a button on the DPAC site.

If you have any questions about what DPAC has done or what we have planned, do not hesitate to reach out and ask us. We are here to make diabetes advocacy easier for you. We value your feedback.

Replay – Ask an Expert: Coordinating Federal Policy

DPAC is proud to present distinguished endocrinologist and passionate advocate for coordinated diabetes policy: Dr. George Grunberger, MD, FACP, FACE. Dr. Grunberger will talk about how Coordinating Federal Policy
DPAC_AAE_Feb_Play

About Dr. Grunberger

Dr. Grunberger is a medical school professor, serves on FDA committees, chaired the American Association of Clinical Endocrinologists (AACE) 2014 Consensus Conference on Glucose Monitoring, serves as current AACE president, and perhaps most significantly, still sees patients in clinical practice. That description only scratches the surface of his experience. You can read his full bio here.

He understands the patient experience with fractured diabetes agencies. It is an understatement to say that Dr. Grunberger is an expert.

Coordinating Federal Policy

We proudly present Dr. Grunberger sharing his unique perspective on how to improve the role of the many federal agencies that impact diabetes. Recorded as part of the Diabetes Patient Advocacy Coalition’s Ask An Expert series on February 23, 2016. Click here to play the webinar with Dr Grunberger.

Skip to toolbar