Diabetes Isn’t a Death Sentence, If You Can Afford It | Emmabella Rudd | TEDxFSU
At age five, the speaker learned she had Type 1 Diabetes, forcing a life dependent on insulin shots and constant monitoring. She transitioned from personal management to advocacy, spearheading efforts to lower the exorbitant cost of insulin, arguing that drug pricing is a failure of the American free-market healthcare system. She urges legislators to cap insulin prices, citing pharmaceutical lobbying spending as evidence of systemic failures that treat life-saving medication as a commodity rather than a right.
## Speakers & Context
- **Speaker:** A Type 1 diabetic who first presented on educational advocacy and later became a policy advocate.
- **Context:** The narrative details personal medical milestones (diagnosis at age five) evolving into large-scale policy advocacy concerning the cost of insulin.
- **Audience Impression:** The initial experience transitioned from being viewed with pity or curiosity ("diabetes girl") to being recognized as a powerful political advocate.
## Theses & Positions
- Insulin is a right to life, not a commodity whose price can be determined by the free market.
- The US healthcare system is fundamentally broken, especially regarding drug pricing due to corporate overreach.
- Advocacy requires direct engagement with government policy, legislation, and holding power structures accountable.
- Patients and advocates have the power to force necessary systemic change in policy.
## Concepts & Definitions
- **Type 1 Diabetes:** An autoimmune disease where the body's immune system attacks and destroys the pancreas's insulin-producing beta cells.
- **Insulin:** A hormone that allows sugar (glucose) to enter cells to produce energy.
- **Autoimmune Disease:** A condition where the body's immune system mistakenly attacks healthy body tissues.
- **Genetic Marker:** Specifically located on chromosome 6, increases risk when combined with an environmental trigger.
- **Patent Evergreening:** Pharmaceutical tactic used to extend patents and prevent generic competition.
- **Insulin Pump:** A device that delivers insulin automatically, requiring changes every three days (later models connect to CGM).
- **Constant Glucose Monitor (CGM):** A device worn on the arm that monitors blood sugar levels 24/7 using a microchip under the skin.
## Mechanisms & Processes
- **Diagnosis Process:** Initial symptoms (extreme thirst/parched feeling) followed by vomiting after consuming sugar; initial diagnosis confirmed by pediatrician after blood sugar testing at 35 pounds at age five.
- **Diabetes Management:** Requires regular insulin injections before meals (breakfast, lunch, dinner); historically required frequent testing, sometimes overnight.
- **Insulin Pump Operation:** Replaced daily shots with a pump requiring changes every three days, delivering insulin continuously.
- **CGM Function:** Monitors blood sugar 24/7 using a subcutaneous microchip and can transmit data wirelessly via Bluetooth to an iPhone.
- **Advocacy Mechanism:** Influencing legislation through personal narrative, educational presentations, and direct lobbying efforts.
- **Lobbying Influence:** Pharmaceutical companies spend significant money to influence government policy and keep drug prices high.
## Timeline & Sequence
- **Age Five:** Initial symptoms recognized; diagnosis of Type 1 Diabetes confirmed.
- **Early Childhood:** Learning to manage glucose levels in public settings, requiring constant vigilance.
- **Middle School:** Attempting to give educational presentations on the condition despite apprehension regarding stigma.
- **Sixth Grade:** Concern over being publicly labeled a "diabetes girl," leading to self-doubt regarding advocacy.
- **Later Advocacy:** Applied to Children's Congress to advocate at Capitol Hill.
- **Current:** Utilizing insulin pumps and CGMs, advocating for policy change regarding drug costs.
- **Early Policy Work:** Working on legislation at age 16 in the State and the House.
- **Policy Stalemate:** Encountering opposition in the House First Committee, despite the urgent medical necessity.
## Named Entities
- **Indianapolis, Indiana:** Location where the speaker was hospitalized following diagnosis.
- **Florida:** Current location for the speaker and associated advocacy work.
- **Congressman Donnelly:** Individual who received support and testimony from the speaker's family/advocates.
- **Georgetown's Health Policy Institute:** Source cited regarding the percentage of US adults using prescription drugs.
- **University of Toronto:** Institution to which Frederick Banting sold the patent for insulin.
## Numbers & Data
- **Age at Diagnosis:** **5** years old.
- **Weight at Diagnosis:** **35** pounds.
- **Key Percentage:** **10%** of people living with Type 1 Diabetes have a family history.
- **Funding Amount:** **$150 million** allocated annually through the Special Diabetes Program.
- **Early Advocacy Support:** Raised over **$10,000** with over **120** people participating in initial fundraising.
- **Drug Cost (US, current):** **$2 to $6** to manufacture, but upcharged to **$250 to $300** per vial.
- **US Price Comparison:** US pays **50% more** in healthcare than any other developed, regulated market.
- **Lobbying Spending:** Pharmaceuticals spent **$353.94 million** lobbying the government last year.
- **Funding Source Comparison:** Lobbying influence cited from: pharmaceutical products (**$28,000**), lawyers/lobbyists (**$27,000**), and insurance companies (**$24,000**), totaling **$127,000** from 'health in general'.
## Examples & Cases
- **Initial Diagnosis:** Parched feeling on a field trip leading to the need for immediate water; later, projectile vomiting after a juice box, leading to hospitalization.
- **Diabetes Education:** Early education efforts in the community after diagnosis.
- **Policy Advocacy (State/House):** Successfully working on a bill concerning subtle, easily misdiagnosed symptoms of Type 1 Diabetes.
- **Insulin Patent History:** Comparison of the patent sale—Frederick Banting sold insulin patent to the University of Toronto for **one dollar**, contrasted with modern pricing.
## Tools, Tech & Products
- **Insulin:** The life-saving hormone required for energy production.
- **Water Bottle:** Initial source of relief on the field trip.
- **Juice Box:** Used in the early diagnostic phase; also used in the mouth for nocturnal blood sugar checks.
- **Insulin Shot:** Early necessary method of delivery.
- **Insulin Pump:** Life-changing device that replaces daily shots with continuous delivery.
- **Constant Glucose Monitor (CGM):** Subcutaneous device tracking blood sugar 24/7, connecting to an iPhone.
- **iPhone:** Device connected to the CGM for data sharing with family/friends.
## References Cited
- **Gale Diabetes Center:** Cited source stating that one in four people in the US ration insulin.
- **Georgetown's Health Policy Institute:** Source citing that 66% of US adults use prescription drugs.
- **Frederick Banting:** Co-discoverer of insulin, who sold the patent for $1 to the University of Toronto.
## Trade-offs & Alternatives
- **Early Care Trade-off:** Moving from "eating whenever I wanted" to strictly regulated meal times and shots.
- **Treatment Method Trade-off:** Switching from daily manual shots to the continuous, less invasive insulin pump.
- **Pricing Model Trade-off:** Comparing the historic, globally beneficial patent sale ($1) versus the current US model where drug pricing is inflated by patent law, lobbying, and benefit managers.
## Counterarguments & Caveats
- The initial assumption that the condition could be something minor, requiring family history to be present.
- The difficulty of conveying the urgency of drug pricing to a general audience concerned with unrelated issues.
- The current system allows for pharmaceutical companies to use patents to prevent generic competition.
## Conclusions & Recommendations
- Patients must advocate tirelessly for their drug pricing and healthcare access.
- Key action items include: spreading the word, writing to legislators, asking why insulin isn't capped, and running for office to sponsor legislation.
- The ultimate goal is ensuring that "insulin deserves to be for all and insulin is a human right."
## Implications & Consequences
- Broken healthcare systems lead to rationing of life-saving drugs, forcing people to choose between insulin, food, rent, or water.
- The structure allowing for massive lobbying spending ($353.94 million) corrupts the ability of medical professionals (like ER doctors) to advocate for affordable care.
## Verbatim Moments
- *"at the age of five my life would forever be changed when the doctors told my parents and i when we arrived to the hospital that if i had not made it that day i would have not made it through the night"*
- *"What possibly could go wrong for me to hate shot everyone hates shots at a young age"*
- *"The moment that changed his life."* (Not applicable, but the theme is recurring personal turning points)
- *"How could i move forward with someone who or something that maybe every every student i was going to school with would think there's a diabetes girl"*
- *"This is a life changer now"* (referring to the insulin pump).
- *"it's just has a tube it gives insulin every day or every minute i'm up here"* (describing the modern pump).
- *"the first thing i noticed as I watched Lukes teach was his passion."* (Not applicable, but the *feeling* of passion/dedication is key here)
- *"when these corporations are taking advantage at the age of 16"*
- *"Frederick banting said that insulin does not belong to me it belongs to the world"*
- *"patients are going to win this fight because insulin deserves to be for all and insulin is a human right"*