The Haystack Project
  • Home
  • About Us Participants Partners Board and Advisors
  • Priorities
  • PROTECT Rare
  • Rare Disease Approvals HEART Act
  • Speaker Series Payer Engagement Health Equity 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/
    • Rare Disease Approvals
    • HEART Act
  • Programs/
    • Speaker Series
    • Payer Engagement
    • Health Equity
    • 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/
    • Rare Disease Approvals
    • HEART Act
  • Programs/
    • Speaker Series
    • Payer Engagement
    • Health Equity
    • Rare Cancer
  • Policy/Comments/
    • Inflation Reduction Act
    • Medicare
    • Section 340b
    • Medicaid
    • FDA
    • ICER
  • Patient Stories/
  • Join/
  • Take Action/
May 12, 2025

BCBSA Accelerated Approval 5.7.25→

May 12, 2025/ Tiara Logan

Read here.

May 12, 2025/ Tiara Logan/ /Source
Letters

Tiara Logan

May 09, 2025

Newborn Screening Coalition Letter→

May 09, 2025/ Tiara Logan

Read here.

May 09, 2025/ Tiara Logan/ /Source
Letters
FDA

Tiara Logan

September 26, 2024

Haystack FDA DAP Guidance Comment 9.26.24→

September 26, 2024/ Tiara Logan

Read here.

September 26, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
FDA

Tiara Logan

September 03, 2024

Haystack Data Elements ipay2027→

September 03, 2024/ Tiara Logan

Read here.

September 03, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
Medicaid

Tiara Logan

July 08, 2024

Haystack mdpnp Guidance ipay2027 Comment→

July 08, 2024/ Tiara Logan

Read here.

July 08, 2024/ Tiara Logan/ /Source
Letters, Comment Letters
Medicaid, IRA

Tiara Logan

June 12, 2024

Haystack 6.10.24 IPPS Comment→

June 12, 2024/ Tiara Logan

Read here.

June 12, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
Medicare

Tiara Logan

May 30, 2024

Haystack MA RFI Response 5.29.24→

May 30, 2024/ Tiara Logan

Read here.

May 30, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
Medicare

Tiara Logan

May 01, 2024

Haystack MPPP Model Documents Comment →

May 01, 2024/ Tiara Logan

Read here.

May 01, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
Medicare

Tiara Logan

March 20, 2024

Haystack MPPP Pt 2 Guidance Comments 3.15.24→

March 20, 2024/ Tiara Logan

Read more.

March 20, 2024/ Tiara Logan/ /Source
Letters, Comment Letters
IRA

Tiara Logan

March 04, 2024

Haystack Part D Redesign Comments

March 04, 2024/ Tiara Logan

Read more.

March 04, 2024/ Tiara Logan/
Comment Letters, Letters
IRA

Tiara Logan

February 12, 2024

Haystack Project Support of HR 485→

February 12, 2024/ Tiara Logan

Read here.

February 12, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
ICER

Tiara Logan

January 25, 2024

RFI on Improving and Protecting Access to Gene Therapies→

January 25, 2024/ Tiara Logan

Read more.

January 25, 2024/ Tiara Logan/ /Source
Comment Letters, Letters
Medicaid, Medicare

Tiara Logan

September 20, 2023

Medicare Prescription Payment Plan Guidance →

September 20, 2023/ Tiara Logan

Read more.

September 20, 2023/ Tiara Logan/ /Source
Comment Letters, Letters
IRA, Medicare

Tiara Logan

August 21, 2023

Haystack Comments on CMS Proposed Evidence Standards NCD→

August 21, 2023/ Tiara Logan

Read more.

August 21, 2023/ Tiara Logan/ /Source
Comment Letters, Letters
Medicare, Medicaid, cms

Tiara Logan

August 21, 2023

Haystack Comments CMS Proposal on CED→

August 21, 2023/ Tiara Logan

Read more.

August 21, 2023/ Tiara Logan/ /Source
Comment Letters, Letters
medicare, medcaid

Tiara Logan

August 17, 2023

Access to Rare Indications Toolkit→

August 17, 2023/ Michelle Osburn

Read more.

August 17, 2023/ Michelle Osburn/ /Source
Letters
rare

Michelle Osburn

August 17, 2023

DRAFT: Haystack expresses gratitude for the support of Representatives and the "PROTECT Act"→

August 17, 2023/ Michelle Osburn

Read more.

August 17, 2023/ Michelle Osburn/ /Source
Letters, Comment Letters
rare, protect

Michelle Osburn

July 31, 2023

Haystack comments on CMS' Information Collection Request for Negotiation Data Elements (CMS-10847)→

July 31, 2023/ Michelle Osburn

Read more.

July 31, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
cms, icr, IRA

Michelle Osburn

July 28, 2023

Haystack's responses to the bipartisan RFI on potential refinements to the 340B drug discount program→

July 28, 2023/ Michelle Osburn

Read more.

July 28, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
RFI, drug, 340b

Michelle Osburn

July 03, 2023

Haystack's Comments on Craft of bill on State Integrated Care Programs for Dual Eligible Individuals→

July 03, 2023/ Michelle Osburn

Read more.

July 03, 2023/ Michelle Osburn/ /Source
Comment Letters, Letters
cms, medicare, Medicaid, dual-eligible

Michelle Osburn

  • 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.