With a new presidential administration taking over the helm in the U.s., the road ahead for American healthcare and policies impacting diabetes stands at a crossroads.

The ongoing COVID-19 crisis and current reckoning on systemic racial disparities are changing priorities.

Notwithstanding longstanding diabetes policy issues remain peak of mind: insulin affordability, overall drug pricing, access to supplies, and of class health insurance reform for more expansive and accessible care.

So what exactly will the priorities be in 2021 and beyond, for Congress, land legislatures, and patient advocates?

Nosotros at DiabetesMine have explored the outlook for the yr ahead, by talking with key policy leaders, groups, and grassroots advocates.

George Huntley

"The pandemic has put healthcare on everyone's radar in ways it wasn't e'er as visible before," says George Huntley, leader of the Diabetes Patient Advocacy Coalition (DPAC) and the newly rebranded Diabetes Leadership Quango (DLC), who also lives with blazon 1 diabetes (T1D) himself. Both organizations abet for positive legislation and policies on behalf of people with diabetes (PWDs).

No doubt the COVID-19 crisis has exposed many of our healthcare system's glaring gaps and failures.

In fact, a December 2020 survey by the American Diabetes Association (ADA) shows only how roughshod the pandemic has been on PWDs:

  • 43% of U.South.-based PWDs say they have delayed seeking routine medical care during the pandemic, oft because they fright exposure to COVID-19.
  • one in v people say they take foregone or put off getting the technology they need to manage their diabetes, like an insulin pump or continuous glucose monitor (CGM). Most often, this is due to financial constraints.
  • Of those who use a CGM or insulin pump, 15% study they have delayed refilling needed supplies during the pandemic. lxx% of those say that'southward due to financial constraints or hardship.
  • 12% of PWDs have seen their wellness insurance disrupted since the start of the pandemic, often because they have lost their job or considering the person on whose insurance they depend has lost their chore.
  • Of those who say they are newly without health insurance, nineteen% were forced to go on Medicaid and 13% accept get completely uninsured.
  • More than 1 in 4 people with diabetes reported the pandemic has disrupted their ability to get salubrious nutrient, compared to the 10.5% of the full general U.Due south. population that experienced food insecurity in 2019.

"For months we take known that people with diabetes are at heightened risk during COVID. Yet what this data show is that the level of arduousness facing our community from this crisis is at an fifty-fifty more critical point," said the ADA'south CEO Tracey Brownish. "As many as 40 percent of the COVID fatalities — 120,000 Americans — have been people with diabetes, and more in our community may be at risk of the worst of the virus' furnishings because and then many are now unable to manage their diabetes effectively."

At the beginning of 2021, a group of nineteen diabetes organizations formed a collaborative to urge the Centers for Disease Control and Prevention (CDC) to prioritize T1D at the same urgent level equally type ii diabetes, in terms of vaccine distribution. That's an evolving outcome that the Diabetes Community is razer-focused on as vaccines are existence rolled out.

Fortunately, there were several positive changes in healthcare and diabetes care that happened as a result of the COVID-nineteen crunch:

  • an explosion in telehealth for many types of office visits
  • greatly increased use of CGMs in hospitals
  • relaxing of rules allowing for 90-day prescription refills, too equally limits on prior authorization requirements for more than expensive medicines and supplies
  • Medicare and private insurance rule changes allowing PWDs to obtain new diabetes devices without an in-person visit to a physician

Some policy piece of work for 2021 will involve advocating that those changes become permanent, if they're non already.

Telehealth, in particular, is a benefaction to many PWDs because it helps them access efficient care from anywhere.

Advocating for telehealth to continue and abound comes down to convincing Medicare (and thus private insurers) to continue acceptable reimbursement for physicians to provide virtual visits. Conspicuously, doctors demand to be paid adequately for this type of work.

"If we go backwards on telehealth, information technology's not a positive," Huntley said. "The number one reason a Medicare recipient didn't get to an appointment for needed care, prior to the pandemic, was lack of transportation. Nosotros all understand it has to be in the context of overall patient care, but for PWDs it could replace a few visits and help and then many people. Let's not striking the off switch, allow'due south keep information technology turned on and toggle the settings from in that location."

National diabetes organizations like the ADA and JDRF accept spent a lot of time in recent years striking on healthcare reform problems and pushing to protect the Patient Protection and Affordable Care Deed (ACA) that first passed in 2010, just has been under attack for the by decade largely by the GOP.

Not surprisingly, ACA-related research shows that having health insurance coverage makes a big difference in diabetes outcomes.

This volition exist a pressing topic during the next four years given President Joe Biden's leadership and the Democrats' control of both the U.Due south. House and Senate. It will be especially loftier priority before the midterm Congressional elections in November 2022, when passing legislation often gets more difficult, if not impossible.

"We've been playing defense for the by several years," Huntley said. "Simply now is the time, with an administration and leadership change. No matter where your politics prevarication, having new leadership — especially Democratic leadership that'southward more open — is a phone call to activity. Advocates can take a positive influence."

In November 2020, the DLC led a coalition of 12 diabetes orgs that released a consensus statement on health reform for PWDs, delving into various issues that will be a priority in the coming years. The key principles listed are:

  • Everyone deserves access to affordable and effective healthcare.
  • Diabetes care is preventive care. Long-term healthcare costs for people with diabetes are lower when they have the medications, devices, and services they demand to manage their disease.
  • National healthcare reform must address the roles and incentives of major stakeholders in the healthcare coverage, delivery, and reimbursement systems, and realign their practices and obligations in support of patients' rights to understand the terms of their coverage, compare treatment costs, and make informed decisions in collaboration with their healthcare providers; and affordably access individualized handling needed to effectively manage chronic and astute wellness weather.

The 3rd indicate nearly transparency in coverage and pricing is definitely a hot-push upshot.

The new Public Health Service Act, aimed at making hospital pricing for common services more transparent and more than accessible for patients, officially went into effect Jan. 1, 2021. This means hospitals across the country are now required to publish and annually update their standard charges for 300 "shoppable services" in a reader-friendly file.

With 2021 marking the 100th anniversary of the discovery of insulin, there will likely be huge efforts to movement the needle on affordability and access this twelvemonth. Especially in the Us, where an insulin affordability crunch is more than pronounced than anywhere else in the world.

Federal efforts to halt middlemen

A 2-year investigation into insulin pricing known as the Senate Finance Committee Report on Insulin Pricing was released on Jan. 13, 2021. The DLC applauded that report for shedding low-cal on the incentives and rebate system that play into Pharma cost-gouging for insulin.

"The written report clearly shows that pharmaceutical companies are afraid to lower their list prices for fearfulness that their pharmacy benefit manager (PBM) — "middleman" — will object to losing a piece of the transaction," the DLC said in a argument.

"These middlemen accept no incentive to lower prices, and nosotros all have seen the effects of it in skyrocketing drug prices. We must dismantle the rebate system and other incentives that provide a conflict of interest to the party negotiating these prices."

Near probable, the lawmakers who led the Finance Committee research — Sen. Ron Wyden (D-OR) and Chuck Grassley (R-IA) — will introduce legislation on the issue of insulin pricing before long, based on this Senate written report. This endeavour follows hearings held in diverse Congressional committees through the years, since early 2017.

JDRF, ADA, and other larger diabetes organizations volition go along to push on this consequence. Already in early January 2021, the national Endocrine Society has published a list of specific policy changes it recommends to increase access to affordable insulin, including assuasive government negotiation of drug prices, and elimination of rebates, along with a dozen other points.

"People with diabetes without full insurance are oft paying increasing out-of-pocket costs for insulin resulting in many rationing their medication or skipping lifesaving doses birthday," said Dr. Carol Wysham, the Guild's president-elect and a practicing physician at Rockwood/MultiCare Health Systems in Spokane, Washington.

The influential California-based nonprofit Across Type 1 (BT1) besides tells DiabetesMine that it plans to focus on insulin pricing advocacy this year.

"On a U.S. federal level, our efforts in 2021 will be on both legislative and regulatory opportunities to curb prescription drug pricing, supporting efforts to re-introduce the Insulin Price Reduction Act (with modifications to reflect changes and additions in the current market)," reports Christel Marchand Aprigliano, chief advancement officeholder for BT1 who lives with T1D herself.

The Insulin Price Reduction Act is a bipartisan bill introduced on October 29, 2019. In a previous session of Congress, it did not receive a vote.

States passing copay caps

On a land level, the ADA, BT1, and others proceed pushing for insulin copay caps, already adopted past fourteen states and Washington D.C., with some taking effect in 2021 or across.

"Nosotros expect a robust effort to bring financial relief through insulin-capping and rebate pass through bills and will be actively engaging through direct and grassroots lobbying," Aprigliano said.

While critics point out that these land copay caps only impact a smaller number of PWDs because they're focused on state-run plans simply (rather than federally governed employer plans), these caps help a number of PWDs in demand save coin on insulin.

Grassroots #insulin4all advocacy

The e'er-growing #insulin4all group of grassroots advocates is sending a strong signal that 2021 will be a landmark year for them.

In early January, they launched a new online effort called The Insulin Initiative, which appears to be focused on rallying behind local and land advocacy campaigns. 1 major priority is lobbying for a federal insulin price cap.

This effort is led past some of the more than vocal advocates involved with #insulin4all, who also doggedly oppose the larger diabetes orgs that take pharmaceutical money.

The group will also undoubtedly be standing its efforts organizing demonstrations in front of the headquarters of Big 3 insulin manufacturers Eli Lilly, Novo Nordisk, and Sanofi.

The UK-based T1International organization has too recently signed a letter to the new Biden administration, urging several points that could impact drug and insulin pricing in the The states — including the launch of an investigation by the Federal Merchandise Commission (FTC) on the Big Three, for what's described equally anti-competitive "dare-like" behavior in setting high prices.

Clearly, more wide-ranging change is necessary to ensure that insulin, meds and reasonable intendance are attainable and affordable for all. The DLC's Huntley, for one, is putting his money on more bipartisan and collaborative efforts even among patient groups in the post-Trump era.

"Our voices together are more powerful. We must muster cooperation in raising the vox of 30 million-plus people who live with this affliction," he said. "That can get us our day in court, our solar day in commission rooms, to get these important issues addressed and passed across the United States."