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April 06, 2020

Contract Year 2021 and 2022 Policy and Technical Changes Letter→

April 06, 2020/ Rebecca Balliet

Contract Year 2021 and 2022 Policy and Technical Changes to the Medicare Advantage Program, Medicare Prescription Drug Benefit Program, Medicaid Program, Medicare Cost Plan Program, and Programs of All-Inclusive Care for the Elderly

Read more.

April 06, 2020/ Rebecca Balliet/ /Source
Letters, Comment Letters
Part D - Rx Drugs

Rebecca Balliet

March 27, 2020

Joint Letter re Medicare Home Infusions→

March 27, 2020/ Rebecca Balliet

Read more.

March 27, 2020/ Rebecca Balliet/ /Source
Comment Letters, Letters
covid, medicare

Rebecca Balliet

December 23, 2019

Anti-Kickback Statute Comment Letter→

December 23, 2019/ Rebecca Balliet

Read more.

December 23, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters, Patient Assistance Progra, PatientAssistancePrograms
patientAssistancePrograms

Rebecca Balliet

December 23, 2019

Cures 2.0 Input Letter→

December 23, 2019/ Rebecca Balliet

Read more.

December 23, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters
legislation, other issues

Rebecca Balliet

October 02, 2019

Comments to the Centers for Medicare & Medicaid Services’ (CMS’) proposed rule updating the hospital inpatient prospective payment system (IPPS) →

October 02, 2019/ Rebecca Balliet

Read more

October 02, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters
cms

Rebecca Balliet

September 06, 2019

ICER Curative Treatment Proposed Methodology Circulation→

September 06, 2019/ Rebecca Balliet

Read more.

September 06, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters
ICER

Rebecca Balliet

June 24, 2019

Haystack IPPS Letter→

June 24, 2019/ Rebecca Balliet

Read more.

June 24, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters
Medicare

Rebecca Balliet

June 20, 2019

American Porphyria Foundation Letter→

June 20, 2019/ Guest User

Read more.

June 20, 2019/ Guest User/ /Source
Comment Letters, Letters
medicare

Guest User

June 10, 2019

Comments on ICER Value Framework Update for 2020→

June 10, 2019/ Rebecca Balliet

Read now.

June 10, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters
ICER

Rebecca Balliet

April 08, 2019

OIG/HHS Rebate Rule Comment Letter→

April 08, 2019/ Rebecca Balliet

Download here.

April 08, 2019/ Rebecca Balliet/ /Source
Letters, Comment Letters
other issues

Rebecca Balliet

December 11, 2018

Haystack Calls for Ongoing Dialogue with CMS on Extremely Rare Diseases→

December 11, 2018/ Rebecca Balliet

Read more.

December 11, 2018/ Rebecca Balliet/ /Source
Letters, Comment Letters
Medicare

Rebecca Balliet

May 18, 2018

340B Stakeholder Letter→

May 18, 2018/ Rebecca Balliet

Read the letter.

May 18, 2018/ Rebecca Balliet/ /Source
Letters, Comment Letters
340b

Rebecca Balliet

February 26, 2018

Solicitation of New Safe Harbors and Special Fraud Alerts→

February 26, 2018/ Rebecca Balliet
Solicitation of New Safe Harbors and Special Fraud Alerts

The Haystack Project urges the OIG to develop a safe harbor to enable financial assistance from charitable entities, and directly from a manufacturer, so that patients can access the rare disease treatment they need.

Read More
February 26, 2018/ Rebecca Balliet/ /Source
PatientAssistancePrograms, Letters, Comment Letters
safe harbors
October 20, 2017

Haystack Project Joins Fellow Patient Orgs in Calling Attention to the MassHealth Section 1115 Demonstration Amendment→

October 20, 2017/ Rebecca Balliet

Read more.

October 20, 2017/ Rebecca Balliet/ /Source
Letters, Comment Letters
Medicaid

Rebecca Balliet

September 25, 2017

ICER Ultra-Rare Disease Comment→

September 25, 2017/ Rebecca Balliet

Read more.

September 25, 2017/ Rebecca Balliet/ /Source
Letters, Comment Letters
ICER

Rebecca Balliet

September 12, 2017

PPS-340b comment Letter→

September 12, 2017/ Rebecca Balliet

Read more

September 12, 2017/ Rebecca Balliet/ /Source
Letters, Comment Letters
340b, Medicare

Rebecca Balliet

September 10, 2017

MACRA Letter - CY 2018 Updates to the Quality Payment Program CMS-5522-P→

September 10, 2017/ Rebecca Balliet

Read more

September 10, 2017/ Rebecca Balliet/ /Source
Comment Letters, Letters
Medicare

Rebecca Balliet

August 21, 2017

Ultra Rare Stakeholders QPP Comment→

August 21, 2017/ Rebecca Balliet

Read more

August 21, 2017/ Rebecca Balliet/ /Source
Comment Letters, Letters
Medicare

Rebecca Balliet

August 06, 2017

Comment Letter on IPPS from National MPS Society→

August 06, 2017/ Rebecca Balliet
Comment Letter on IPPS from National MPS Society

Read comments from the National MPS Society on IPPS urging making access to treatment for patients with rare diseases a priority.

Read More
August 06, 2017/ Rebecca Balliet/ /Source
Comment Letters
Medicare
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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.