[Congressional Record Volume 163, Number 123 (Thursday, July 20, 2017)]
[Senate]
[Pages S4118-S4119]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SENATE RESOLUTION 226--DESIGNATING THE WEEK OF JULY 17 THROUGH JULY 21, 
  2017, AS ``NATIONAL ECTODERMAL DYSPLASIAS WEEK'' AND SUPPORTING THE 
   GOALS AND IDEALS OF NATIONAL ECTODERMAL DYSPLASIAS WEEK TO RAISE 
          AWARENESS AND UNDERSTANDING OF ECTODERMAL DYSPLASIAS

  Ms. BALDWIN submitted the following resolution; which was referred to 
the Committee on the Judiciary:

                              S. Res. 226

       Whereas ectodermal dysplasias is a congenital disorder that 
     causes defects to the skin, hair, nails, teeth, and glands of 
     an individual and can also cause harm to other body parts of 
     an individual, such as the eyes, ears, and throat;
       Whereas ectodermal dysplasias is a genetic disorder that is 
     passed from parent to child;
       Whereas a child may be the first individual in a family to 
     be affected by ectodermal dysplasias and can then pass the 
     condition on to the next generation;
       Whereas ectodermal dysplasias is a rare disorder that 
     affects fewer than 200,000 people in the United States;
       Whereas symptoms of ectodermal dysplasias in an individual 
     can include--
         (1) the inability to perspire;
         (2) lack of tears in the eyes;
         (3) cleft lip and palate;
         (4) sparse saliva;
         (5) missing fingers or toes; and
         (6) absence or malformation of some or all teeth, known 
     as anodontia and hypodontia, respectively;
       Whereas there are more than 180 different types of 
     ectodermal dysplasias and a specific diagnosis depends on the 
     combination of symptoms that an individual experiences;
       Whereas there is no cure for ectodermal dysplasias;
       Whereas the treatment for ectodermal dysplasias varies 
     depending on the severity of the disease, which can range 
     from mild symptoms to extensive health issues that require 
     advanced care;
       Whereas many types of ectodermal dysplasias affect the 
     teeth and the nature of dental and oral symptoms--
         (1) are specific to each syndrome; and
         (2) can include severe hypodontia and anodontia that 
     require complex care;
       Whereas an individual who suffers from ectodermal 
     dysplasias can expect to spend approximately $150,000 on 
     dental care alone during the lifetime of the individual;
       Whereas most insurance companies provide coverage for the 
     treatment of a congenital disease or anomaly;
       Whereas most States require coverage for any repair or 
     restoration of body parts for a congenital disease like 
     ectodermal dysplasias;
       Whereas coverage for complex and medically necessary dental 
     procedures that are required because of ectodermal 
     dysplasias, including prosthetic teeth and bone grafts, is 
     routinely denied;
       Whereas access to health insurance coverage for medically 
     necessary dental services relating to ectodermal dysplasias 
     varies across the United States;
       Whereas gaps in ectodermal dysplasias coverage have serious 
     consequences for patients and their families and may lead to 
     severe limits on proper oral function and the ability to eat 
     or speak;
       Whereas scientists across the United States are conducting 
     research projects and

[[Page S4119]]

     clinical trials and are hopeful that breakthroughs in 
     ectodermal dysplasias research and treatment are forthcoming; 
     and
       Whereas the Senate is an institution that can raise 
     awareness about ectodermal dysplasias to the general public 
     and the medical community: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates the week of July 17 through July 21, 2017, 
     as ``National Ectodermal Dysplasias Week'';
       (2) supports the goals and ideals of National Ectodermal 
     Dysplasias Week to raise awareness and understanding of 
     ectodermal dysplasias;
       (3) encourages the people of the United States to become 
     more informed about--
       (A) ectodermal dysplasias; and
       (B) the role of comprehensive treatment for all symptoms of 
     ectodermal dysplasias, including dental manifestations, in 
     improving quality of life; and
       (4) respectfully requests that the Secretary of the Senate 
     transmit an enrolled copy of this resolution to the National 
     Foundation for Ectodermal Dysplasias, a nonprofit 
     organization dedicated to improving the lives of individuals 
     affected by ectodermal dysplasias.

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