What is JDRF doing to to fight against insurance companies

Hi, I am a very upset T1D of a 12 year old boy that has had diabetes for 2 years. My husband recently took a new job that we thought would benefit our family. We even made sure we read through all the new benefit materials, but yet now for over 2 months I have been working with Omni Pod and his Dr. to get his pods for his Omni pod that he has been on well over a year. His insulin went from $4 a month to $75 his pods were going from $40 a month to $120 a month. Now after 2 months of calling almost daily to see when he can get his new pods, BCBS Anthem says that his pump is not medically necessary and they aren’t going to cover. Yes, I know we can file appeal after appeal, but WHY? I know JDRF supports new innovations, and peoples hard earned dollars are being donate to the cause and most are never able to actually use any of this technology. I want to know what is JDRF doing to fight for better insulin prices, or fighting to not allow insurance companies to tell you that something isn’t medically necessary that improves your life? What is the point of all these new innovations, if only the elite can afford them, since insurance companies play GOD with your child’s health. My son is mentally having a hard time with his diabetes and yes his A1C has not been the greatest, but he is also going through so much mentally the pump is the only thing that keeps him somewhat healthy. He will not give himself shots, so how would him going back to pens help him? It’s only going to send him to the hospital, which I think would cost the carrier more than covering his pods. I will scrap borrow and steal to keep him on this pump with or without insurance, so I don’t have to see him cry even more and become more depressed, but what happens when he is a man or I am no longer here? Will he continue to fight or will he just give up? T1D have to fight for their life daily, now they have to fight with insurance carriers to live a more healthy life, HOW IS THAT FAIR!?! Then if you do happen to get approved, and you become more healthy they say you then no longer need the pump. What logic is that!??? There should be more regulations in place that protect T1D. When is someone going to March on capitol hill for these children?? These JDRF walks should not be at your local park raising money for something some of us will never be able to obtain, they should be taken place in front of BCBS, UHC, Kaiser, Capitol Hill, with picket signs telling them to end the fight for someone who is already fighting daily.

Thoughts of a protective T1D mother that wants to see real change.
Adella Salinas

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@adellagrey Hello Adella.

JDRF advocacy information can be found here

Donating to causes that advance research is never, ever 1:1… That is, a donation of 1 zillion dollars does not mean you get to be cured first, or cured at all. And while I get your frustration the US healthcare system is a mess of for-profit insurance companies, and unimaginable red tape.

A major part of any job search for me is to understand the company benefits and what and how it affects me. I have turned down potential great jobs because of this, and it shapes and affects most of my career decisions. Still I am fortunate because I remain covered although the recent 10 years I have seen my fair share of increases (of about 500%).

I am sorry about your situation. it’s terrible. it means you have to fight now, and no one cares if you started off exhausted.

This web site isn’t a front for the JDRF. it’s a self-help social network. you are not directing this question to any kind of authority and everyone here shares this same experience to some extent.

Also, and please believe me I am not making light of your son’s situation. I survived a decade without a blood sugar meter because it was not available for ANY price. I survived insulin made from ground up animal based pig and cow pancreases mixed in with stuff to keep it from absorbing all at once. I didn’t want to inject myself either, but at the time my choice included doing it or die. So I did it. When confronted with the impossible, I change my mind about what I will not do. There is always a way.

I agree that life saving hormones, insulin included, should be provided to those that can’t make it themselves anymore. I just don’t have the energy or resources to change it at this time so I make the best of what I got.

I hope your appeal and situation improves with great speed.

Hello Adella @adellagrey, I can feel your frustration, anger and hurt. I’ve been in similar circumstances and had to make due - for instance in the “good old days” when a blood sugar test cost $10 and my weekly salary was $52 and doctor’s visits and lab tests were not covered by any insurance so I went without for several years - yes, in 1960 when I moved out on my own in 1960 and had to pay for things minimum wage was $0.75 per hour.
I don’t know the benefit package choices you husband had to make, but one of the key points I made / make when choosing a health insurance plan is the “formulary” - or specifically which medications and DME are covered “in network” - and with what co-pays. Pumps are usually covered under “Durable Medical Equipment” but the OmniPod because it is completely disposable is not considered to be durable. There are other pumps your son could use - have these been considered; and HIS doctor must certify “medical Necessity”.

I do have the time and energy, well maybe not the time, but i will make it and so should JDRF. At the moment I was very upset and venting, but i don’t change my stance with wanting to know what, if anything, they are doing to help change the laws. An as someone who donates I should be able to ask those questions. We are now in the tech age and insurance companies should not play God. I know they do and that is the way it has always been, but change cannot happen if you can’t even ask the question. Sorry if this is the wrong forum. I mean no disrespect to this forum. I have emailed JDRF, ADA, congressman, but no one listens. I will keep fighting for my son no matter what, what choice do I have. I would scream from the rooftop if I thought just once someone might hear my cry and help make a change for our future T1Ds.

Healthcare Reform
People with T1D need access to affordable health insurance that covers the care necessary to treat their diabetes. To survive, they rely on daily supplies of insulin and the tools required to dose this life-saving medication.

Healthcare Principles
JDRF has released a set of healthcare principles and is working with a variety of stakeholders to advocate that these principles are considered in any healthcare reform that may take place. This includes:

Preserving protections for those with pre-existing conditions so they have access to comprehensive health insurance at rates similar to people without such conditions. Under the current law, there are provisions to ensure that people with preexisting conditions—like the 1.25 million Americans who live with T1D—cannot be denied coverage, charged significantly higher premiums or have their benefits curtailed by insurance. This is crucial for people with T1D who need health insurance coverage to access the drugs and devices that keep them alive every day.
Allowing young adults to stay on their parents’ insurance until the age of 26. Current health law allows young adults to join or remain on their parents’ health insurance until the age of 26. Remaining on a parent’s plan is crucial to children and young adults with diabetes who have much greater healthcare expenditures, approximately 2.3 times higher, than their peers without diabetes. The provision, which ensures these young people have consistent and affordable access to supplies and medications necessary to manage their disease, continues to have broad bipartisan support.
Prohibiting insurance companies from setting annual and lifetime dollar limits for essential health benefits (EHBs). Before passage of the ACA, insurance companies were able to set dollar limits—either annually or for the entire enrollment period—on spending for an individual’s covered benefits. For people with chronic illness, annual and lifetime caps on EHBs can present a wide array of problems and worry. Consider insulin, a prescription medication, to which daily access is essential for people with T1D to stay alive.
Closing the coverage gap in most Medicare prescription drug plans by 2020. These plans have a temporary coverage gap for drugs, or “donut hole,” during which people with T1D may not be able to afford their prescription medications. The current healthcare law reduces these expenditures for approximately 200,000 to 300,000 people with T1D enrolled in Medicare.
Taking Action
June 2018 – JDRF wrote a letter to the U.S. Department of Health and Human Services (HHS) Secretary Alex Azar expressing our grave concern with the Administration’s recent stance in litigation related to pre-existing conditions and requesting a meeting to discuss how to ensure current law protections for people with pre-existing conditions are preserved. It is our position that health insurance companies should not be able to charge people with type 1 diabetes (T1D) more money for health coverage.
September 2017 – JDRF issued an action alert to mobilize advocates nationwide to voice their concerns about the Graham-Cassidy proposal to their senators.
September 2017 – JDRF released a statement with 15 other patient and provider groups opposing the proposal put forward by Senators Lindsey Graham (R-S.C.), Bill Cassidy (R-La.), Dean Heller (R-Nev.), and Ron Johnson (R-Wis.). This proposal would negatively impact patients’ access to adequate and affordable health coverage and care.
July 2017 – JDRF convened more than 160 Delegates from across the country at the JDRF 2017 Children’s Congress. Delegates met with their Members of Congress, asking them to support the renewal of the Special Diabetes Program, robust funding for the National Institutes of Health and U.S. Food and Drug Administration, and to preserve our health reform principles.
June 2017 – JDRF issued an action alert engaging its grassroots network to contact their senators urging them to craft legislation that would uphold our key health reform principles.
May 2017 – JDRF released a statement after the House bill passage expressing disappointment in the bill’s passage and urging the T1D community to contact the Senate to make their voices heard.
May 2017 – JDRF signed a letter with nine other organizations and released a statement opposing the American Health Care Act (AHCA) with the MacArthur amendment, which weakens protections for pre-existing conditions.
March 2017 – JDRF joined with major nonpartisan patient groups to push for access.
December 2016 – JDRF joined with more than 70 organizations to send a letter to then President-elect Trump and Congressional leadership explaining the importance of policies protecting those with pre-existing conditions and allowing young adults up to age 26 to remain on their parents’ health plan.

Meet Angie Platt: 2017 Children’s Congress Family Chair
Platt FamilyAngie Platt and her family are delighted to serve as JDRF 2017 Children’s Congress (CC) Chair Family, and to join our Delegates in Washington, D.C., this July for what she describes as “the most inspiring and powerful Advocacy event that JDRF puts on!”

Angie first became involved in JDRF in 2009 when her son Jonathan was diagnosed with type 1 diabetes (T1D) at the age of six. She and her husband Jon, an accomplished publishing executive, promised Jonathan that “since he cannot take a day off from diabetes, we will not take a day off from helping to extinguish this terrible disease.” And the Platts have lived up to their promise.

Angie has spent years passionately advocating for funding for T1D research in JDRF Promise to Remember Me meetings, and fundraising at JDRF One Walks and Galas. She currently serves on the board of the Los Angeles Chapter and on the JDRF International Board of Directors.

The Platts are no strangers to CC; Jonathan was a 2011 Delegate and testified before a U.S. Senate Special Committee on Aging hearing to advocate for Federal Government funding for T1D research. It was a pivotal moment for the Platt family as they aligned with their purpose to serve as advocates for everyone affected by T1D.

The JDRF Advocacy family is tremendously excited to welcome Angie Platt and her family back to Washington, D.C., for JDRF 2017 Children’s Congress! We know she is thrilled to meet all of our Delegates and their families, and join them on Capitol Hill for an incredible few days of advocacy.

Promote Regulatory Frameworks that Spur Innovation
Ensure United States regulatory policies provide clear and reasonable pathways for scientific research and therapy approvals.
JDRF is engaging the FDA to encourage regulatory frameworks for T1D therapies that promote continued innovation and improve public health, including:

Artificial Pancreas: JDRF worked closely with the FDA to establish guidance for artificial pancreas device systems, which was finalized in 2012, and led to approval of the first insulin-dosing system in 2016. JDRF continues to work with the agency to shape regulatory expectations for next-generation AP systems, including facilitating interoperability of components and the open protocol model.
Prevention Therapies: JDRF plays a leading role in a consortium seeking FDA qualification of certain T1D biomarkers, or measurable indicators of the disease. Qualification facilitates the agency’s regulatory decision-making and may accelerate research and development of promising prevention therapies to stop or slow the progression of T1D.
Beta Cell Replacement: JDRF educates FDA staff on beta cell encapsulation technologies—which wrap insulin-producing islet cells in a protective barrier before implanting them into the body. These therapies may give people with T1D freedom from insulin injections for up to two years. The FDA approved the first clinical trials of one product in 2014, and several others are in development.
JDRF also supports current research policies which provide strict ethical oversight for federal research using stem cell-based technologies in encapsulation and cell-based therapies for other diseases.
T1D Outcomes: JDRF organized the T1D Outcomes Program, which resulted in publishing a consensus statement defining outcomes for use in evaluation of T1D therapies in research, regulatory review and healthcare reimbursement. JDRF is continuing to work with regulators to ensure the outcomes are utilized in their processes.
Pediatric Enrollment in Clinical Trials: Inclusion of pediatric subjects in T1D clinical trials is important for research and development of T1D therapies, but regulatory approval for this has been challenging in some cases. JDRF is working with the T1D community to facilitate regulatory approval for the inclusion of pediatric patients in trials through education and establishment of best practices.
Regulatory Pathways for Other Priority T1D Therapies: As additional priority research initiatives are developed – in areas such as restoring vision, immunotherapies and others – JDRF will work to ensure regulatory pathways allow needed research, development and approval.
Promote access to T1D Therapies and Technologies
People with T1D need access to exciting new innovations to benefit from them.
JDRF is proud to spearhead a series of initiatives to improve healthcare access for people with T1D along with our allies, including The Leona M. and Harry B. Helmsley Charitable Trust, T1D Exchange and various diabetes clinical and advocacy organizations.

Coverage, Affordability and Choice of T1D Therapies
Medicare CGM Coverage: JDRF calls for Medicare to cover the full range of approved blood glucose measurement and control devices.
Artificial Pancreas Coverage: JDRF supports broad healthcare coverage for artificial pancreas (AP) systems. JDRF has successfully advocated to private insurers for coverage for these ground breaking devices, the first of which came to the market in 2017, and now the 25 largest plans all cover them. JDRF will continue to advocate for coverage of current as well as future systems by private plans as well as Medicare and Medicaid.
Insulin Pump Choice: JDRF strongly opposes health plan policies that limit choice of insulin pumps, and advocates for a competitive marketplace that fosters innovation. JDRF also supports expansion of Medicare pump coverage to include patch pumps, a change enacted by The Center for Medicare and Medicaid Services (CMS) in early 2018.
Out-of-Pocket Costs for Insulin and Diabetes Management Tools: JDRF urges employers, health plans and manufacturers to put in place policies that enable insulin and other diabetes management tools to be available at low, predictable out-of-pocket costs. This will prevent life-threatening conditions such as diabetic ketoacidosis and severe hypoglycemia.
Barriers to Improved Care: JDRF is evaluating barriers to adoption for T1D therapies to ensure the T1D community can benefit from new technologies. JDRF also supports plans for a diabetes clinical care commission to address potential federal barriers to improved care.
Protections in Health Reform for Pre-Existing Conditions
In 2017, JDRF released a set of healthcare principles and joined with other organizations representing people with chronic, serious and life-threatening diseases to oppose legislation that violated these principles. This includes:

Preserving protections for those with pre-existing conditions
Allowing young adults to stay on their parents’ insurance until the age of 26
Prohibiting yearly and lifetime dollar limits for essential health benefits (EHBs)
Closing the donut hole in Medicare Part D
Evaluation of New Therapies
Clinical Evidence: JDRF collaborates with partners to advance research evaluating the effectiveness of T1D therapies and to help provide healthcare decision-makers with adequate information to make coverage decisions.
T1D Unmet Need: JDRF commissioned new analyses of T1D healthcare data to better understand and educate healthcare decision-makers about unmet needs in the population.
T1D Outcomes Program: JDRF organized the T1D Outcomes Program, which proposes an expanded set of outcomes upon which to evaluate T1D therapies.

while the above should provide you with some reading material, please realize that advocacy and changes to insurance rules are not ever gong to mean that an Omnipod will be free (or even covered) for your son. sometimes we have to focus to change the things we can,

As you can see Adella @adellagrey there is much that JDRF has done, and continues to do, to improve life for people living with diabetes; I personally have participated in JDRF funded studies and trials and I’ve benefited even when participating in studies that did not work out as planned or anticipated. But I do not see how you or anybody can expect a company to sell to you a product that isn’t in its portfolio. Clearly, OmniPod, even though it is an excellent product is bot included in your insurance company’s preferred services. Which insulin infusion methods / pumps does your chosen insurance company cover?

Put another way, I have a craving for a birthday dinner featuring a thick, rare, fatty slab of prime rib; I certainly will not be eating at a Healthy Vegetarian joint. :slight_smile: Yes, a bit of humor, my wife is taking me tonight to a wonderful fresh seafood place to welcome in my 78th year of life and my 62nd year living with diabetes.

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I would never expect it to be free. I get what you are saying and I’m trying to take a more positive approach. Thank you for the readi my material.

Without filling endless pages of my journey and how I came to be at this moment. Please read this part of the Affordable Care Act (https://www.congress.gov/bill/114th-congress/senate-bill/2736/text) that changed my life. I received a new ($20K USD by insurance standards) for $20 and supplies for less. I’m a self employed established artist, 39M, who has lived with T1D for 15 years, and has fought endlessly to attain this information. Medicaid and Medicare are available in your states. Please SHARE

hi Regis @r3g15, that link does lead to a wonderful bill, sponsored by the Republican Senator from South Dakota that became law. Enough said on that, and keep politics away from this forum.

This Topic should read, What is JDRF doing to work with insurance companies. To find that answer, and there is much JDRF is and has accomplished, visit the JDRF main webpage - jdrf.org - and fin out. You could volunteer to assist.

Thanks for your response. I said nothing or implied nothing political. I just provided knowledge and research into finding financial freedoms and answers to those having difficulty navigating the current healthcare/insurance system. The link was to give people a credible source for their own research.

If you would do your own research, you would find that the current CEO of JDRF is also a trusted member/employee of Monsanto. I will keep my opinions at bay from there, but enough said on that.

Don’t be so sure you know everything, because almost everything is not what it appears. Diabetes is a business and we are part of that, accept it or not. Real change comes from playing “their” game(s) and equipping our fellow people(s) with knowledge and the tools to fight “their” own battles.

I’m not coming from a place of aggression, but passion. I wish you good health and happiness. Maybe next time start with a question instead of an accusation.

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It most definitely is a business that people are making millions or most likely billions from, including JDRF and big PHARMA, and that is why my title is what it is, because I am beyond thinking we can “work with insurance companies”. I dont mean to sound so negative, but the thought my 12 year old has to fight for enough insulin or strips to keep him helathy and safe makes me sick to my stomach. I have been told to not be so negative on this forum, and I get that, but I’m fighting angry and honestly I think more of us should be, and demand answers and change instead of tip toeing. Especially when more fund’s got to JDRF administration then a cure. I have seen though things that JDRF has done to help with insurance companies and I am truly greatful, but they work on donations…so they work for us that donate and I’m allowed to ask questions.

Life is a struggle. It’s more of a struggle for some than others. The best thing YOU can do is to focus on what you CAN change rather than what you can’t.

Instead of trying to take on Billion dollar healthcare companies and Capitol Hill, keep calling your insurance, write to them and harrass them until they give in. If they don’t, you must move on. Consider purchasing an insurance from the exchange that you know pays for Omnipod. Diabetes is one of MANY diseases that require expensive treatment and some people would trade places with a diabetic in a heartbeat.

I know someone who has ALS. He is permanently and completely paralyzed and can only move his eyes. He is fed through a tube. He can potentially live many many years this way and his wife and children can do nothing about it. His medical costs in one month are probably more than my medical costs for five years including all my insulin, pump and sensor supplies.

Countries that offer free healthcare also come with a slew of other issues. Good jobs are harder to find, businesses are harder to start and groceries are more expensive. There is a balance to everything.