T1International USA

Life with diabetes is complicated. Access to vital insulin, diabetes supplies and medical care should not be.

Auburn, ME   |  https://www.t1international.com

Mission

We are a non-profit led by people with and impacted by type 1 diabetes for people with type 1 diabetes. We believe in a world where everyone with type 1 diabetes – no matter where they live – has everything they need to survive and achieve their dreams. We support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all. It is our priority to be able to speak out and push for change, so we do not accept money from pharmaceutical companies or any other body that we feel might influence our ability to do this. We will always be transparent about where our money comes from and what we spend it on.

Ruling year info

2019

Founder & Executive Director

Elizabeth Pfiester

Main address

250 Center Street Ste 6 #1009

Auburn, ME 04210-6313 USA

Show more contact info

EIN

84-2544817

NTEE code info

Research Institutes and/or Public Policy Analysis (G05)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2019.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We believe in a world where everyone with type 1 diabetes – no matter where they live – has everything they need to survive and achieve their dreams. Insulin is as necessary to a person with type 1 diabetes as oxygen is to any human being, and there are over 7 million Americans that rely on injected insulin to stay alive and healthy. Since the 1990s, the cost of insulin has increased over 1,200%, yet the cost of production for a vial of analog insulin is between $3.69 and $6.16. Spending by patients with type 1 diabetes on insulin nearly doubled from 2012 to 2016, increasing from $2900 to $5700. One of every four patients with type 1 diabetes has had to ration their insulin due to cost. Many have died as a result.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

T1International USA Core program includes our:

T1International supports 39 grassroots volunteer-led Chapters across the USA. Our advocates have secured national media coverage, educated the public and politicians, gained commitments to ensure transparency and, ultimately, lower insulin costs. Our Federal Working Group is a forum through which advocates engage with federal-level action to impact the cost/price of insulin and strategize how to best advocate for it.

We host an annual #insulin4all workshop, bringing together advocates and the wider diabetes community to listen, learn and connect on a global scale. The free event provides an interactive and informative space for anyone wanting to find out more about the #insulin4all movement and grow their advocacy skills. T1International also carries out the most extensive patient-led out-of-pocket cost survey for people living with diabetes every 2 years, including questions about insulin utilization, delivery methods, COVID-19 impacts, cost and more.

Population(s) Served
Health
Social and economic status
Ethnic and racial groups
Age groups

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of multi-year grants received

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

2020 - 2021 2 year grant from Arnold Ventures

Number of new grants received

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

2020 - 2021 2 year grant from Arnold Ventures

Number of public events held to further mission

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

T1International USA Core program includes our:

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Annual T1International Workshop

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

T1International and patient advocates have been working on insulin access and affordability issues since 2013. We support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all. If the millions of Americans that are insulin dependent (and their allies) speak up, government representatives will take action to hold insulin manufacturers accountable and ensure insulin is affordable and accessible for all. We will continue to advocate as a united community, free of pharmaceutical industry influence, until #insulin4all is a reality.

We raise awareness of type 1 diabetes (T1D) issues and share the voices of people living with T1D around the world. We do this by working with a network of state based Chapters and their advocates to encourage and enable local communities to stand up for their rights and share their stories.

We work toward a higher standard of research, data and statistics about the issues faced by those with type 1 diabetes (T1D). We deliver a global survey every two years that reports the out of pocket costs of living with type 1 diabetes and work with our partners and networks to ensure accurate and relevant information is collected to support our mission.

We act as a knowledge hub, providing and signposting to key information and resources related to type 1 diabetes (T1D). We continually build out our tools and resources both for our advocates and the wider public. We translate our resources in to many languages and are always working to grow accessibility of our information and support to all communities.

We campaign for systemic and sustainable change for people with type 1 diabetes (T1D) globally. Alongside our work in individual states we also campaign on the federal level, working with partners and advocates to ensure the insulin crisis stays on the national agenda and movement is made for long term high level change.

Founded in 2013, T1International is a diabetes advocacy organization that continues to truly embody a patient-led ethos with patients, parents, caregivers and allies within its ever growing team of staff and volunteers who are at the heart of every decision and action. Together we fight for affordable access to essential insulin and diabetes supplies worldwide by educating and empowering dedicated advocates to take action. T1International USA was officially founded in November 2019, and over the past 18 months has grown from one full time staff person into a solid and efficient team, with strong organizational structures to support our long term success.

Programmatically, T1I USA has been able to celebrate multiple legislative wins including playing a significant role in keeping insulin pricing on the national radar. T1International is the only patient-led diabetes organization addressing insulin and supply prices through global grassroots advocacy.

- We build genuine relationships with people living with and impacted by diabetes and get continual feedback to ensure that the patient communities' priorities are our organization's priorities.

- We continue to grow our community to best reflect the many nuanced perspectives and range of people with diabetes and their lived experience. We work to ensure that our movement is fully representative of the wider community, especially in lifting up the voices of the most impacted and historically excluded communities.

- We continue are in the minority in our stance on not receiving pharma funding and retaining our complete independence and ability to put the needs of the patient first. We always have a strong response to pharma rhetoric and can source the best representation for responses and activities from our community.

- We continue to stay at the forefront of insulin access issues, building our knowledge as a team and educating advocates on its history, context, its disparate impact and research findings. We also continually grow our data and our partnerships so that we are uplifting patients' voices in every platform.

Some key highlights that showcase our progress so far are:

- We have facilitated 50+ patients with diabetes and their families the opportunity to take part in state and federal level hearings to tell their stories and share their truths.

- Alongside our advocates we have taken more than 100 other actions that have led to the passage of insulin and medication price legislation across the United States. For example, since July 2020, 465 Minnesotans have accessed life-saving insulin due to the Alec Smith Affordability Act. Several states are now working to pass similar legislation, including Maine.

- We ensured that the World Health Organization made diabetes and insulin access issues a priority, passing a resolution on diabetes that includes transparency measures. The WHO has asked T1I for insight into our patient-led model.

- T1I and our advocates celebrated a monumental advocacy win as the World Health Organization (WHO) announced the addition of long-acting insulin analogues to the Model List of Essential medicines (EML). T1International staff and volunteers around the world submitted testimony and campaigned in large numbers in support of analogues being added to the EML.

- Since 2018 we have stablished and managed 39 #insulin4all Chapters in the USA, with thousands of active volunteers, including patients with diabetes, caregivers and allies, and thousands more affiliated both in the USA and internationally.

- We have a monthly space for our Legislative Leads to support Chapters in increasing their knowledge and skills related to developments on state-level legislation around access to insulin. It also builds community and provides a forum to educate Chapters about priority subjects related to our mission. This year, we hosted guests from the Democracy Collaborative and AELP and state policy makers to support Chapters in winning state based legislative efforts.

- We have our Federal Working Group to ensure patients and impacted communities are guiding our federal level policy work from the ground up.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    People living with diabetes, their family, carers and their communities

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person),

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

T1International USA
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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T1International USA

Board of directors
as of 10/11/2021
SOURCE: Self-reported by organization
Board chair

Fiona Conner

Heather Robinson

Kim Carter Martinez

Cameron Hall

Matthew Dinger

Erin Worbs

Gabi Agustamar

Nicole Smith-Holt

Melissa Passarelli

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 2/4/2021,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/04/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.