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Hidradenitis Suppurativa Patients call on the USA Rare Disease Congressional Caucus

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Hidradenitis Suppurativa ( Acne Inversa ) Patients call on the the United States of America’s Rare Disease Congressional Caucus for renewed leadership

Patients worldwide call on the United States to take the lead in support of the Rare Disease Congressional Caucus to engage and follow through on a new effort to realize Hidradenitis Suppurativa (HS) awareness with a patient-focused ethic. Measurable progress has started to gain momentum within research, treatment, education, and awareness. While we as patients continue to fight for support, acceptance, and understanding, there has never been more of a need for recognition and support by our leaders than today.

A new effort is needed where H.Res.1037 of the 110th Congress left off. Please see the March 11, 2008, resolution as Mr. Kagen submitted http://goo.gl/GsO5J2. It is the right thing to do since Hidradenitis Suppurativa research and awareness are publically known for their neglected status in medical history for centuries now.

H.Res.1037 tragically died after being referred to the Committee on Energy and Commerce several years ago. There sadly has been no additional activity on the Federal level outside of current support for Bio Pharmaceutical giant AbbVie, makers of the highest grossing drug in pharmaceutical sales history. This is a drug currently breaking the 16 billion a year mark in sales and is now poised to protect a patent on HS treatment for a very long time, thanks to the FDA’s new Office of Orphan Products Development (OOPD).

Our global community of patients need the acknowledgement and support we deserve. Federal support is currently being afforded to Bio Pharmaceutical giant AbbVie, such as the Orphan Drug Designation for HUMIRA® granted by the FDA and the approval of Humira as the only treatment for moderate to severe Hidradenitis suppurativa. While a gift to some patients who have never had a treatment available, it is not a final solution by any means or without serious risk.

We need heroes within our leadership to stand up for this historical injustice. We the patients are the ones who have borne the burden as lab mice for decades, if not centuries. Even to this day with the FDA passage and Orphan Drug Designation for HUMIRA®, an investigation carried out upon the backs of us as a global population of patients and most importantly our children, off label or not. It is time to help those directly who have never benefited from our own government services and are the most in need.

We would ask the Rare Disease Caucus to deliver on the closing statements of Mr. Kagen’s from H.Res.1037.

That the United States House of Representatives—

(1) supports the designation of a National Hidradenitis Suppurativa Awareness Month, to raise awareness regarding Hidradenitis Suppurativa; and
(2) requests the President to issue a proclamation designating such a month, and calling on the medical community and other interested groups to engage in educational activities and promote the need for further Hidradenitis Suppurativa research.

We respectfully demand a new effort be championed due to events and circumstance that have transpired since the failure of H. RES. 1037.

Thank you kindly for your time,

HS patients worldwide
http://hsawareness.org
hello@hssupport.org


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|| Rare Disease Congressional Caucus

Established in 2009, the Rare Disease Congressional Caucus is bipartisan (comprising both Democrats and Republicans) and bicameral (comprising both Representatives and Senators). The original GOP Co-Chair Congressman Fred Upton (R-MI) has become Chairman of the House Energy and Commerce Committee, arguably the most powerful House committee.

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|| AbbVie’S HUMIRA® (adalimumab)  

AbbVie Receives Orphan Drug Designation for HUMIRA® (adalimumab):
The U.S. Food and Drug Administration (FDA) has granted HUMIRA® (adalimumab) orphan drug designation for the investigational treatment of moderate-to-severe hidradenitis suppurativa (HS) (Hurley Stage II and Hurley Stage III disease), a painful, chronic inflammatory skin disease.
Source: http://goo.gl/hLevnH

FDA approves Humira for moderate to severe hidradenitis suppurativa:
“Many dermatologists are familiar with using adalimumab and treatments like it for our patients with psoriasis; this approval expands our ability to expertly manage a different but also severely affected group of patients with great unmet need,” Kimball said.

Source: http://goo.gl/wNI7Ez

 
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|| Hidradenitis suppurativa (HS) Supporting Reference

RES. 1037, 110th CONGRESS, 2d Session:
Expressing the need for enhanced public awareness of Hidradenitis Suppurativa, and for the support of the designation of a National Hidradenitis Suppurativa Awareness Month. “Mr. Kagen submitted the following resolution; which was referred to the Committee on Energy and Commerce.”
Source: http://goo.gl/GsO5J2

Hidradenitis suppurativa markedly decreases quality of life and professional activity
The results found for HS in our study showed greater QOL impairment than those found in some other dermatoses, including psoriasis,12, 13, 14 atopic dermatitis,15, 16 acne vulgaris,17, 18 alopecia,19 Darier disease, 20 Hailey–Hailey disease, 20 and even chronic urticaria.21 Wolkenstein et al7 also noted a significantly greater HS impact on QoL than observed in chronic urticaria, atopic dermatitis, and psoriasis.
Source: http://goo.gl/jzAg4b

AISI: A New Disease Severity Assessment Tool for Hidradenitis Suppurativa.
Because these lesions are painful and affect body sites that may limit movement functionality (eg, the axillae and groin), and impair physiological functions (ie, genital areas, breasts, buttocks), HS dramatically interferes with daily activities, having an overall negative impact on QoL and psychosocial attitude. More than other chronic skin disorders, the negative impact on QoL in patients with HS is a hallmark of this disease.
Source: http://goo.gl/BX75ef

Quality-of-life impairment in patients with hidradenitis suppurativa: a Canadian study
The impact on QoL for patients with HS is extensive yet underestimated; quantifying and assessing the burden of disease for the individual and society will lead to establishment of funding priorities and greater awareness of this condition.
Source:  http://goo.gl/MdjHFU

Hidradenitis Suppurativa: Update on Diagnosis and Treatment June 2014
“Hidradenitis suppurativa, also called acne inversa, is a chronic, debilitating skin disease characterized by painful, deep inflammatory lesions.
Source: http://goo.gl/9KovH3

Hidradenitis Suppurativa: Number of Diagnosed Patients, Demographic Characteristics, and Treatment Patterns in the United States
“Recent regional and insurance database studies indicate that diagnoses of hidradenitis suppurativa (HS) are rare, with fewer than 200,000 affected patients in the United States.”
Source:  http://goo.gl/9203As

Diagnosis of Hidradenitis Suppurativa in the United States, 1979-2012
Delayed diagnosis is a significant problem in the management of HS. In the past decade, there has been an increase in HS research.
Source: http://goo.gl/FFhSmj

 



This petition was delivered to:
  • Leonard Lance (R-NJ)
  • Joseph Crowley (D-NY)
  • Amy Klobuchar (D-MN)


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