News and Events

LADA Partners on Albany Event

Lupus and Allied Diseases Association (LADA) partnered with New
York State Rheumatology (NYSRS), Global Healthy Living Foundation
(GHLF), and U.S. Pain Foundation to co-host a community education
event on patient access issues sponsored by Coalition for State
Rheumatology Organizations (CSRO) on January 16, 2018 at the Fort
Orange Club in Albany. Even despite a N'oreaster taking place over
50 people attended the event. We thank CSRO for the opportunity.



LADA, U.S. Pain, NYSRS, Arthritis Foundation and GHLF
Advocates with Senator Susan Serino (center) at the event. 
The speakers pictured in the four photos below spoke on
access issues impacting the New York State 
patient
and provider communities that disrupt medical care.


Assemblywoman Crystal Peoples-Stokes



LADA President & CEO Kathleen Arntsen   

U.S. Pain Foundation Director of State Advocacy Emily Lemiska
 

GHLF Director of Policy & Advocacy Steve Marmaras 



Lupus: Patient Voices Meeting


Top decision makers at the U.S. Food and Drug Administration
(FDA) heard from over 550 people impacted by lupus on
September 25, 2017 at an unprecedented in-person meeting
and live webcast about what it's really like to live with the
disease and what they need most from new treatments.


The Lupus and Allied Diseases Association, the Lupus Foundation
of America, and the Lupus Research Alliance organized the
meeting as part of the FDA's externally-led Patient-Focused
Drug Development (PFDD) Initiative. The PFDD was created by
the FDA to allow regulators to better understand the perspectives
of people with disease such as lupus so they can better assess
the benefits and risks of drugs under review.

For more information visit  LupusPFDD.org



Lupus Community Representative Kathleen Arntsen
had the honor
of giving Opening Remarks at the
Lupus PFDD Meeting on behalf of the community



LADA Representatives Tiffany Westrich-Robertson, 
Lisabeth Iglesias, and Kaamilah Gilyard at the Meeting


LADA Board Secretary David Arntsen, Attendee
Lorenzo Hall, and LADA President & CEO
Kathleen Arntsen at the PFDD Pre-Meeting Dinner



Thrilled to be at the Lupus PFDD Meeting


The Lupus PFDD Community at the Pre-Meeting Dinner on September 24, 2017


Advocating For EPAP

On September 7, 2018 Patient Advocates Kathleen Arntsen
and Peter Morley hand carried a letter requesting the activation
of the Emergency Prescription Assistance Program (EPAP)
signed by patient advocacy and healthcare provider organizations
to Senate Minority Leader Charles Schumer.

EPAP helps people in federally-identified disaster areas
who do not have health insurance get the drugs, vaccinations,
medical supplies and equipment they need. The initiative
was spearheaded by Brian Nyquist, Executive Director
of National Infusion Center Association (NICA) who
is located in Austin, TX in the wake of Hurricane Harvey
in Texas. We asked Senator Schumer to personally
deliver the letter to then U.S. Department of Health and
Human Services (HHS) Secretary Tom Price who had
not responded to our multiple requests to activate EPAP.

The effort was then expanded to include Florida and
California residents after Hurricane Irma struck in Florida,
and then the wildfires hit California. EPAP was
finally activated for Puerto Rican residents in the aftermath
of Hurricane Maria. Secretary Price resigned from his office
in late September due to other unrelated issues.



Pictured above from left to right Patient Advocate Peter
Morley, Senator Charles Schumer, and Patient Advocate
Kathleen Arntsen meeting on September 7, 2017 to
discuss EPAP Activation in his U.S. Capitol Office.



Above and Beyond


Dr. Donald Raddatz, Chief, Division of Rheumatology at Bassett
Medical Center and Honorary Chairman of our Lupus Charity
Golf Classic for the past 16 years surprised us with a donation
of $1,190.00 on August 5, 2017. The monies came from Bassett
Healthcare Rheumatology Research Funds that had been
established in the 1980's for use in SLE and Rheumatologic
Disease Research. Both Dr. Raddatz and Bassett Healthcare
decided to close the account and donate the funds to LADA.
Thank you to both Dr. Raddatz and Bill Stamp from Bassett
Healthcare for their generosity in supporting our organization. 


Dr. Donald Raddatz donating funds to Kathleen Arntsen for LADA



Advocacy Champions Honored




Lupus Alliance of Upstate New York E.D. Judith Christian

presented Kathleen Arntsen with the new LEAN Forward
Award at their Illumination Lupus Event on May 20th. 
Kathleen was also the keynote speaker at the dinner.




Assemblywoman Crystal Peoples-Stokes was also 
honored with the LEAN Forward Award as a champion 
of lupus and healthcare issues in the state legislature.



Biosimilars Summit



Kathleen Arntsen participated as a panelist at the Biosimilars
Summit on April 6th sponsored by the Biologics Prescribers
Collaborative (BPC) and Alliance for Patient Access (AfPA).
The panel discussed state access issues and advocacy strategies.

  
BIO NJ Forum

BIO NJ held a workshop on "The Value of Medical Innovation:
The Patient's Voice" at Amicus Therapeutics on December 8th
in Cranbury, NJ featuring various healthcare stakeholders.

Link to Video Overview 


Kathleen Arntsen sharing her patient perspective on value 


BIO International Meeting

President & CEO Kathleen Arntsen and Vice President Jackie Taylor
attended the BIO International Scientific Meeting in San Francisco
where LADA had an exhibit in the Patient Advocacy Pavilion. They also
participated in partnering meetings, attended educational forums, 
networking events, and Kathleen presented a patient perspective 
on a panel sponsored by Precision Health Economics 
discussing "The Future of Biosimilars" on June 8, 2016.


  
Kathleen Arntsen with fellow panelists: Geoffrey Eich, Amgen; Darius 
Lakdawalla, USC & PHE; Tomas Philipson, U of Chicago & PHE; Dana 
Goldman, USC & PHE discussing the impact  biosimilars' policy will 
have on patient value and access at the BIO Meeting.
 


 

Contact Us:
Lupus and Allied Diseases Association, Inc.
PO Box 170
Verona, NY  13478
Telephone 315-829-4272
Toll Free Phone 1-866-258-7874 or 1-866-2-LUPUS-4
Fax 315-829-4272
e-mail
 Info@LADAinc.org