Legislative Points

First, I would like to thank the following Legislative individuals for taking the time to meet with our Team (Myself, Mary and Judith) on Monday, March 8th as well as for their continued support and recognition to the required funding needs essential for NIH to continue their pursuit of research.

Kacey Wood, Legislative Aide – Senator Amy Klobuchar (D-MN) Office

Courtney L. Weaver, Legislative Correspondent – Senator Jim Webb (D-VA) Office

Robin Goracke – Legislative Director – Congressman Collin C. Peterson (D-MN-7) Office

Frank Talbott, V – Legislative Assistant – Honorable Eric Cantor, Republican Whip (R-VA-7) Office

Molly E. Conway – Legislative Assistant – Congressman John Kline (R-MN-2) Office

As a representative of the rare disease community and a child with gastrointestinal issues, I enjoyed the opportunity to support the DDNC in their efforts to combat, prevent and treat digestive diseases.

WE must continue to support $35 Billion for the National Institutes of Health (NIH) and $2.19 Billion for the NIDDK for FY2011.  WE must support additional spending in those programs we care about : IBD research and Awareness Act, S.981, H.R. 2275, and Pancreatic Cancer Research and Education Act (H.R. 745) and those areas of ORD (NIH Office of Rare Diseases) – such as the Undiagnosed Diseases Program.

We should not limit a child’s access to a specific medical methodology because it does not warrant a certain classification of understood coverage.  

We need coverage and we must refrain from lifetime and annual insurance caps.  Over several years, my child’s health care cost hundreds of thousands of dollars due to surgeries, hospitalizations and 27 mandatory physician appointments (including therapies) per year.  Some of our RSS children suffer even more, and some less – but, we cannot dismiss the need for a level of care that is not well-understood.  We cannot nor should not forget about the mental health and related specialized treatment protocols vital in managing a child with special needs; nor, the medicine, the research, and the ongoing therapies required to manage a child with Russell-Silver Syndrome – or any rare disease for that matter.

As related to GI nutrition, HC companies misunderstand the need for supplemental nutrition, home infusion therapies, and other approaches to GI related feeding needs.  RSS children are never hungry and their reflux and gut dysmotility (in some cases severe) issues compound the lack of desire for food – thus, the importance of proper nutrition and in MANY cases – g-tube placement.  Health Care companies (including Medicare and Medicaid) in many circumstances have denied coverage and/or access to these types of necessary treatment options as well as the requisite equipment essential for nutritional maintenance.

Families are continually challenged and faced with limited insurance availability and in some cases limited treatment options for chronic illnesses due to the lack of knowledge prevalent in health care companies – this is a burden by families that should not be bared.

As an advocate for Russell-Silver Syndrome and the rare disease community, I support the need for additional funding resources toward research and education on gastrointestinal disorders and increasing awareness of how GI issues/diseases affect the rare disease community.  As in the case of Russell-Silver Syndrome – our children suffer from Gut dysmotility, delayed gastric emptying, and reflux issues – with an unknown epidemiology.  In many rare disease cases – GI issues are merely a “symptom” of their disease along with a host of other chronic illness type characteristics.  G-tubes and enteral feedings are the standard treatment protocol for failure-to thrive children – such as RSS and in many cases – other types of rare disease. 

On October 5, 2009, the NIH announced that ORDR, in collaboration with NINDS, NICHD, NHLBI, NIDDK, NIAID, NIDCR, and NIAMS, funded 19 rare diseases clinical research consortia and one Data Management Coordinating Center.   

As a mother with a child diagnosed with Russell-Silver Syndrome, as well as an advocate and supporter for rare diseases, it is important that we continue to understand the importance of good quality care for all chronically ill children and the level of research necessary to provide suitable treatment methodologies.

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