The Haystack Project
  • Home
  • About Us Participants Partners Board and Advisors
  • Priorities
  • PROTECT Rare
  • Modernizing-FDA HEART Act
  • Speaker Series Payer Engagement Health Equity Patient Oriented Value Rare Cancer
  • Inflation Reduction Act Medicare Section 340b Medicaid FDA ICER
  • Patient Stories
  • Join
  • Take Action
The Haystack Project
  • Home/
  • About/
    • About Us
    • Participants
    • Partners
    • Board and Advisors
  • Priorities/
  • PROTECT Rare/
  • FDA/
    • Modernizing-FDA
    • HEART Act
  • Programs/
    • Speaker Series
    • Payer Engagement
    • Health Equity
    • Patient Oriented Value
    • Rare Cancer
  • Policy/Comments/
    • Inflation Reduction Act
    • Medicare
    • Section 340b
    • Medicaid
    • FDA
    • ICER
  • Patient Stories/
  • Join/
  • Take Action/
Blue-Banner.png
The Haystack Project

Resources

The Haystack Project
  • Home/
  • About/
    • About Us
    • Participants
    • Partners
    • Board and Advisors
  • Priorities/
  • PROTECT Rare/
  • FDA/
    • Modernizing-FDA
    • HEART Act
  • Programs/
    • Speaker Series
    • Payer Engagement
    • Health Equity
    • Patient Oriented Value
    • Rare Cancer
  • Policy/Comments/
    • Inflation Reduction Act
    • Medicare
    • Section 340b
    • Medicaid
    • FDA
    • ICER
  • Patient Stories/
  • Join/
  • Take Action/
April 01, 2023

A young boy’s nightmare diagnosis, and the $3 million one-time treatment that will likely save his life→

April 01, 2023/ Michelle Osburn

Read more.

April 01, 2023/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

March 30, 2023

Press Release: Victoria Blatter Joins Haystack Project’s Board of Directors→

March 30, 2023/ Michelle Osburn

Read more.

March 30, 2023/ Michelle Osburn/ /Source
news, Haystack

Michelle Osburn

March 27, 2023

Haystack's comments on the small biotech exception to the drug negotiation provisions of the Inflation Reduction Act→

March 27, 2023/ Michelle Osburn

Read more.

March 27, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
IRA

Michelle Osburn

March 14, 2023

Haystack's comments in response to CMS' Notice of proposed rulemaking on Advancing Interoperability & Improving Prior Authorization Processes→

March 14, 2023/ Michelle Osburn

Read more.

March 14, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicaid, medicare

Michelle Osburn

March 13, 2023

Haystack's Comments in response to CMS' Medicare Part B Inflation Rebate Guidance→

March 13, 2023/ Michelle Osburn

Read more.

March 13, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicaid, medicare, IRA

Michelle Osburn

March 11, 2023

Haystack's comments in response to CMS' Medicare Part D Inflation Rebate Guidance→

March 11, 2023/ Michelle Osburn

Read more.

March 11, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicare, medicaid, IRA

Michelle Osburn

March 09, 2023

Haystack's Project Letter to FDA on the Implementation of the HEART Act→

March 09, 2023/ Michelle Osburn

Read more.

March 09, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
HEART Act, GAO, NAM, FDA

Michelle Osburn

March 03, 2023

Haystack's comment's on CMS' Advance Notice of Methodological Changes→

March 03, 2023/ Michelle Osburn

Read more.

March 03, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
payer engagement

Michelle Osburn

March 03, 2023

Haystack's comments on the PCORI's draft inventory of attributes→

March 03, 2023/ Michelle Osburn

Read more.

March 03, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
payer engagement

Michelle Osburn

March 03, 2023

POV Report - Choroideremia→

March 03, 2023/ Michelle Osburn

Read more.

March 03, 2023/ Michelle Osburn/ /Source
Reports
Choroideremia, other issues, ICER, advocacy

Michelle Osburn

February 13, 2023

Haystack's Comments on CMS Proposal to Oppose For Rare Diseases→

February 13, 2023/ Michelle Osburn

Read more.

February 13, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicaid, medicare

Michelle Osburn

January 30, 2023

Haystack's comments on CMS' RFI related to EHB under the ACA→

January 30, 2023/ Michelle Osburn

Read more.

January 30, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
medicaid, medicare, affordable care act

Michelle Osburn

January 30, 2023

Haystack's Sign-On Letter on Proposed Rule on Patient Protection and Affordable Care Act→

January 30, 2023/ Michelle Osburn

Read more.

January 30, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
patient protection, affordable care act

Michelle Osburn

January 13, 2023

Haystack's sign-on letter providing analysis of coverage with evidence development (CED) criteria →

January 13, 2023/ Michelle Osburn

Read more.

January 13, 2023/ Michelle Osburn/ /Source
Letters, Comment Letters
comment letter, medicare

Michelle Osburn

January 13, 2023

Haystack's comments on improving coverage for individuals dully-eligible for Medicare and Medicaid→

January 13, 2023/ Michelle Osburn

Read more.

January 13, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
comment letter, medicare, medicaid

Michelle Osburn

December 30, 2022

Gene therapy trial shows promise for treating ‘bubble boy’ syndrome. Now comes the hard part→

December 30, 2022/ Michelle Osburn

Read more.

December 30, 2022/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

December 15, 2022

Revenge of the gaslit patients→

December 15, 2022/ Michelle Osburn

Read more.

December 15, 2022/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

December 12, 2022

Like Celine Dion, Pennsylvania man is fighting Stiff Person Syndrome 'with everything I have’→

December 12, 2022/ Michelle Osburn

Read more.

December 12, 2022/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

December 06, 2022

Haystack Responds to CMS’ National Provider Directory RFI→

December 06, 2022/ Michelle Osburn

Read more.

December 06, 2022/ Michelle Osburn/ /Source
Comment Letters
advocacy, medicare, news, other issues

Michelle Osburn

November 30, 2022

Haystack response to 2022 National Strategy to Support Family Caregivers→

November 30, 2022/ Michelle Osburn

Read more.

November 30, 2022/ Michelle Osburn/ /Source
Comment Letters
other issues, news

Michelle Osburn

  • Previous
  • Next

About Us

The Issues

Resources

News & Updates

© 2020 Haystack Project. All Rights Reserved. 

 

Contact Us

Please consider making a tax-deductible donation to support the Haystack Project today.

The Haystack Project is a 501(c)3 nonprofit that brings together patients organizations representing patients suffering from or caring for patients with extremely rare diseases. Our mission is to educate policymakers and other stakeholders about the need for policies that recognize the unique circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients.