US Diabetes Caucus Neglects Type 1s
WRITTEN BY: Michelle LeGault
2017-01-19
Editorial Update: In January of this year I wrote an article about the U.S. Congressional Diabetes Caucus, which appears to neglect the concerns of the type 1 Community. None of the proposed legislation on their website has to do with the rising price of insulin or with any issues that relate specifically to people with type 1 diabetes.
However, I am happy to report that this June, the chairs of the committee, Diana DeGette and Tom Reed, wrote letters to stakeholders to ask pointed questions and schedule a meeting where they could delve into the issue of the high cost of insulin in the U.S.
This fall, the caucus released some of the findings from their meeting. While DeGette and Reed refer to the high insulin pricing as a “complex” issue, their initial findings did raise some red flags. They said that stakeholders appear to gain financially from the rising prices and that it is debated whether the incremental innovation to insulin over the years justifies the drastic increase in the drug’s retail price. The lock-step pricing between companies was also noted.
On the front page of the caucus’ website you will now see an article about investigating the rising price of insulin. This inquiry is a step in the right direction and will hopefully lead to some proposed legislation. Wouldn’t it be wonderful if there was a limit to how much could be charged for a life-saving drug?
Health care in the United States is unfortunately complicated, but I hope that DeGette and Reed can help unravel some of the mystery surrounding insulin pricing so that it can be made more affordable for everyone.
Did you know that the United States has a congressional caucus that is solely devoted to issues that are important to Americans living with diabetes? On the face of it, this looks great.
While access to healthcare in the United States is on the verge of even more changes it was exciting to me that we have a committee in congress who is devoted to making sure people don’t lose access to diabetic supplies. For people with type 2 diabetes, they can partly manage their disease with diet and exercise, but for people with type 1 diabetes, their bodies no longer produce the insulin they need to live and it is not an option to go without insulin. Without insulin we are not talking about “reduced quality of care” we are talking about “life vs. death.”
However, when I researched the diabetes caucus further, I was shocked to find that not a single one of their proposed legislative actions has to do with the price of insulin in the United States—which has risen by more then 300 percent in recent years and has been reported on by the New York Times and other prominent, credible news organizations. I would also like to point out that we have bought insulin here in Prague for the full retail price of about $40 USD, compared to more than $450 USD in the United States.
Why is this issue not being addressed? At what point does charging such a high profit margin become price gouging or extortion?
If I could sum up the diabetes caucus in a single word I would say “medicare.”
It is true that there are more people in the world with type 2 diabetes and many of them are elderly. However, in congress’s plight to care for one demographic, I believe that another has been totally forgotten. If you are a person with type 1 diabetes, you need insulin injections 24/7 to live; and the majority of people diagnosed with type 1 are children who cannot care for themselves.
This is truly another population of people who needs someone in congress to advocate for them. In addition to being insulin dependent, Type 1 children under the age of 6 are often denied access to daycare or preschool due to lack of training and support for the teachers and staff. Children in elementary are sometimes cared for by a secretary or school aide because not every school has a nurse on staff. And, in some cases, it is the child’s mom or dad who travels to school at lunch time to assist with meal-time insulin. I am not saying that these school aides or secretaries are incapable of doing a good job—I know that many of them provide excellent care—but what I am saying is that healthcare is supposed to be the role of a school nurse and that we should be striving to do better. But, not one of the caucus’ issues has to do with the quality of health care provided to our type 1 children while they are at school.
While there are fewer type 1s in the world, I would argue that they are more likely to require a higher level of supervision and care due to their age and due to the nature of being insulin dependent. This is probably why, as the congress points out (below) that insurance companies will typically approve requests for continuous glucose monitors (CGMs) in the care of type 1 patients—because they are insulin dependent.
How can we do better?
Here is what I would like to see –
1) Congress needs to fight for lower insulin prices. The company that produces the Epi Pen was already called out for inflated prices. Insulin is not just something you need if you have an allergic reaction, it is something required 24/7 and is life sustaining. Lowering the price of insulin should be a priority.
2) Mandatory educational training for all schools, daycares, preschools and after-school programs in recognizing the signs of type 1 diabetes and the basic care of type 1 diabetes. Even if you do not have a student now who is a type 1, you could help in recognizing symptoms in someone who isn’t yet diagnosed. This could save lives.
3) Better access to Social Security dollars for children with type 1 diabetes. Did you know that if you are type 1 you can qualify for SS benefits? To qualify, though, you have to be under the age of 6 and your family has to make very, very little money. For our family of four, I believe, the cap was something like $40,000 per year. If the income limits were raised to give more access to these funds, it would help families to be able to seek out daycares and preschools that have a nurse on staff. Or, they could use these funds to hire a nurse-aide to travel to school and help with meal-time insulin.
4) Doctors, not insurance companies, should be the ones to decide what type of insulin a person is prescribed. Currently, this decision is at the discretion of your insurance company, who chooses your insulin based on the bottom line. That’s right. Your insulin is chosen for you based on the best financial deal that the insurance company can broker with the drug company. The insurance company argues that the major insulins are virtually interchangeable. However, they cannot be “exactly” the same because then the FDA certainly would not have approved them all. And, let’s also agree that our bodies are very complex and no two people are the same. It is not in the patient’s best interest to have prescriptions chosen for them by an insurance person solely based on price with no regard to how this decision impacts quality of care. Regardless, this is what happens now and it needs to stop.
According to the American Diabetes Association there were 29.1 million Americans in 2012 living with diabetes and of that number about 1.25 million had type 1 diabetes. More than one million people in the U.S. living with type 1 is not a small number and this is an old statistic I am quoting you. Every year there are about 40,000 more Americans diagnosed with type 1 diabetes.
I do not understand why it seems that the type 1 community seems to be forgotten by this congressional caucus. To illustrate my point, I am copying for you all of their proposed legislation.
*”medicare” is mentioned 11 times
Diabetes Legislation►
Diabetes legislation introduced by caucus leadership –
Eliminating Disparities in Diabetes Prevention, Access, and Care Act (
H.R. 2651) This bill will enhance research at the National Institutes of Health on the causes and effects of diabetes in minority communities. Additionally, under the bill, the Centers for Disease Control and Prevention will provide more effective diabetes treatment, prevention, and public education to highly impacted populations. This will include access to effective community interventions like the National Diabetes Prevention Program. Lastly, the bill will strengthen the public health workforce in areas highly impacted by diabetes through efforts by the Health Resources and Services Administration. For long-term improvements, the bill requires a report to Congress on the existing federal activities with respect to diabetes and prediabetes in minority populations followed by a strategic plan to address these disparities over time.
Protecting Access to Diabetes Supplies Act (
H.R. 771)
This bill would improve the Competitive Bidding Program (CBP) for Durable Medical Equipment and Supplies to ensure Medicare beneficiaries with diabetes have access to the testing supplies of their choice. Specifically, the 50 percent rule would be strengthened to ensure suppliers actually provide at least 50 percent of the percent of all types of diabetes test supplies on the market before implementation of the CBP. Additionally, the no-switching rule would be strengthened to prevent suppliers from pressuring beneficiaries into changing their choice of testing supplies and make it easier for beneficiaries who wish to change testing supplies to receive the products of their choice
Medicare CGM Access Act (
H.R. 1427) This bill creates a new benefit category under Medicare for CGM devices, identifies beneficiary eligibility, and establishes a fee schedule that reflects market prices and takes into consideration the most recent data. CGMs are physician-prescribed, FDA-approved devices that detect and display glucose levels continuously, and reveal trends in glucose levels that often go unnoticed by using finger-stick measurements alone. Currently, over 95 percent of all private health plans cover CGMs for people with type 1 diabetes, but Medicare does not. Extensive clinical evidence shows use of a CGM improves outcomes, is superior beyond use of a blood glucose monitor alone, and is recommended for use by all leading diabetes professional societies.
Preventing Diabetes in Medicare Act (
H.R. 1686) This bill is designed to help beneficiaries diagnosed with pre-diabetes avoid becoming diabetic by providing access to the best possible nutritional advice about how to handle their condition. Under current law, Medicare pays for medical nutrition therapy (MNT) provided by a registered dietitian for beneficiaries with diabetes and renal diseases. Medicare also pays for the screening of diabetes in the Welcome to Medicare Physical. However, Medicare does not cover MNT for beneficiaries diagnosed as having pre-diabetes, and this legislation would fill that hole in beneficiaries’ care.
Access to Quality Diabetes Education Act (
H.R. 1726) This bill recognizes state-licensed or—registered certified diabetes educators as providers. It also increases education and outreach to primary care physicians about the importance of Diabetes Self-Management Training (DSMT) for their patients with diabetes. In 1997, Congress authorized DSMT as a Medicare benefit, with the goal of providing a more comprehensive level of support to educate beneficiaries about diabetes and self-management techniques, reduce the known risks and complications of diabetes, and improve overall health outcomes. However, under the DSMT benefit, Congress failed to include as providers certified diabetes educators—the main group of health care professionals who provide most of the essential training and education for this service. This legislation fixes this mistake and ensures diabetics have access to their service.
Medicare Safe Needle Disposal Coverage Act (
H.R. 1727) This bill extends Medicare Part D coverage for home-generated needle collection, treatment, and disposal methods, such as FDA-approved sharps containers, needle destruction devices, and sharps-by-mail programs. According to the Food and Drug Administration (FDA), over 9 million home injectors administer at least 3 billion injections outside traditional health care settings. These at-home injectors include people with diabetes and patients receiving home health treatment for allergies, arthritis, and hepatitis B & C, among others. Currently, Medicare Part D provides coverage for insulin syringes and pen needles associated with the injection, but there is no coverage for their safe disposal. This bill recognizes the fact that needle disposal coverage is essential not only for patient safety, but also for the safety of waste removal workers and our communities.
Diabetes legislation introduced by caucus members –
Medicare Diabetes Prevention Act (
H.R. 2102) This legislation provides Medicare coverage for the National Diabetes Prevention Program (National DPP) to individuals at high-risk of developing type 2 diabetes. The National DPP evolved from a successful NIH clinical trial that found individuals with prediabetes—those at the highest risk for the disease—can reduce their risk for type 2 diabetes by 58 percent with lifestyle intervention and modest weight loss of 5-7 percent. Seniors were even more successful, decreasing their risk for the disease by 71 percent. Given that half of all seniors have prediabetes, providing coverage for the National DPP, an evidence-based lifestyle intervention, through the Medicare program can reduce the number of beneficiaries who develop type 2 diabetes and its dangerous complications, including cardiovascular disease, stroke, blindness, lower-limb amputation and kidney disease. Avalere Health estimates the legislation would save $1.3 billion over 10 years.
HELLPP Act (
H.R. 1221) The Helping Ensure Life- and Limb-Saving Access to Podiatric Physicians (HELLPP) Act would recognize podiatrists as physicians under the Medicaid program, as has been the case in Medicare for more than 40 years. Podiatrists are licensed by their state boards to deliver independent foot and ankle surgical and medical care without any supervision or collaboration requirement. Evidence shows that, when podiatrists deliver foot and ankle care, outcomes are better and hospitalizations are fewer and shorter—thereby saving the health care system billions annually. This bill also includes provisions to improve coordination of care in Medicare’s Therapeutic Shoe Program and strengthen Medicaid program integrity to create budget savings.
National Diabetes Clinical Care Commission Act (
H.R. 1192) This bill creates a time-limited commission for the purpose of improving the implementation and coordination of clinical care for patients with pre-diabetes, diabetes and the chronic diseases and conditions that result from diabetes, such as cardiovascular disease, kidney disease, blindness and foot amputations. The Commission is a partnership between private sector experts, including healthcare professionals and patient advocates, and specialists in the Federal agencies most active in clinical care. The Commission will evaluate current federal care management and quality improvement initiatives, identify gaps where new approaches are needed and make recommendations to eliminate duplicative and inconsistent policies and improve the quality of diabetes car and patient outcomes.
If you also have ideas for how Congress can step up their game and propose better legislation, for either type 1 or type 2, I’d love to hear it.
Please feel free to share this information with your local representatives. If these issues are important to you, don’t just agree with me and then let your fire die out. At the very least, you can join us in standing up for lower insulin prices, all you need to do is sign this petition created by the ADA to fight for lower insulin prices.
Read The Million of Us by Eddy Murphy. This story was originally published on Michelle’s blog.
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