[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3525 Introduced in House (IH)]

113th CONGRESS
  1st Session
                                H. R. 3525

 To amend the Foreign Assistance Act of 1961 to provide assistance for 
the treatment of hydrocephalus in children in developing countries, to 
train surgeons and other medical practitioners in innovative methods to 
 treat and cure hydrocephalus, to fund related research, and for other 
                               purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           November 18, 2013

   Mr. Smith of New Jersey introduced the following bill; which was 
              referred to the Committee on Foreign Affairs

_______________________________________________________________________

                                 A BILL


 
 To amend the Foreign Assistance Act of 1961 to provide assistance for 
the treatment of hydrocephalus in children in developing countries, to 
train surgeons and other medical practitioners in innovative methods to 
 treat and cure hydrocephalus, to fund related research, and for other 
                               purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``International Hydrocephalus 
Treatment and Training Act''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (1) Hydrocephalus, also known as ``water on the brain'', is 
        a medical condition in which an abnormal accumulation of 
        cerebrospinal fluid in the ventricles or cavities of the brain 
        causes increased intracranial pressure inside the skull and 
        progressive enlargement of the head.
            (2) If left untreated, hydrocephalus leads to physical and 
        mental disabilities and eventually death.
            (3) Hydrocephalus is an extremely painful condition that 
        most commonly occurs in infants and young children as a result 
        of a congenital abnormality (anatomic abnormality, aqueductal 
        stenosis, spina bifida or encephalocele), or post-infectious 
        hydrocephalus (PIH) caused by infections acquired after birth, 
        such as meningitis, that attack the brain.
            (4) PIH is the most common cause of hydrocephalus globally, 
        accounting for approximately 60 percent of all cases.
            (5) Three to five out of every 1,000 newborns in developing 
        countries are either born with hydrocephalus or acquire it due 
        to neonatal infections in the first few months of life.
            (6) It is conservatively estimated that more than 300,000 
        children are born with or acquire hydrocephalus in the 
        developing world each year.
            (7) Children with hydrocephalus who are not effectively 
        treated or who are not treated in the early stages of the 
        condition suffer from cognitive deficiencies or physical 
        disabilities or both.
            (8) Families of children who have hydrocephalus in 
        developing countries rarely know that it is a treatable 
        condition, where to go for treatment, or how to care for a 
        child suffering from the condition.
            (9) Many children with hydrocephalus in developing 
        countries are abandoned, ostracized, or abused due to their 
        appearance and physical and mental disabilities.
            (10) Hydrocephalus can be treated, and advances in 
        innovative medical procedures such as ETV/CPC have the 
        potential to save thousands of lives annually and prevent or 
        mitigate physical and mental disabilities in thousands of 
        children in developing countries.
            (11) The current standard treatment for hydrocephalus is 
        the VP shunt which often requires up to 5 surgical revisions 
        before a child reaches adulthood to remedy blockages in the 
        shunt and to account for the child's growth. Blockages can be 
        expected during the life of the patient and can lead to death, 
        particularly in developing countries where access to the 
        requisite medical expertise often is not available.
            (12) Due to the need for multiple replacements of a VP 
        shunt, this treatment is expensive and creates an increased 
        burden on fragile health systems, patients, and families.
            (13) ETV/CPC is a shunt-less surgery for hydrocephalus that 
        does not require a VP shunt and has been shown to be 
        appropriate in at least two-thirds of the cases of infants with 
        hydrocephalus. Of those cases, ETV/CPC is 93 percent effective 
        in eliminating hydrocephalus.
            (14) Few hospitals with the expertise and capacity to treat 
        hydrocephalus exist in developing countries, and the demand for 
        treatment far exceeds the capacity of health systems in those 
        countries.
            (15) Neurosurgical care for hydrocephalus in developing 
        countries is widely unavailable due to a lack of trained 
        neurosurgeons. In East Africa, there is only 1 neurosurgeon per 
        10,000,000 people. In many developing countries there are no 
        trained neurosurgeons.
            (16) Hundreds of thousands of cases of hydrocephalus in 
        children in developing countries could be successfully treated 
        if adequate resources are devoted to training surgeons in new 
        techniques, such as ETV/CPC, and many future cases could be 
        prevented if adequate resources are devoted to research means 
        to mitigate the preventable causes of hydrocephalus.
            (17) Adoption of innovative new techniques to treat 
        hydrocephalus, such as ETV/CPC, are more cost effective in the 
        long term than current treatment methods since only one surgery 
        is required in most cases, thus limiting the impact on 
        overburdened health systems in developing countries.

SEC. 3. ASSISTANCE TO TREAT HYDROCEPHALUS AND TRAIN SURGEONS.

    Chapter 1 of part I of the Foreign Assistance Act of 1961 (22 
U.S.C. 2151 et. seq.) is amended--
            (1) by redesignating the second section 135 (as added by 
        section 5(a) of the Senator Paul Simon Water for the Poor Act 
        of 2005 (Public Law 109-121; 119 Stat. 2536)) as section 136; 
        and
            (2) by adding at the end the following:

``SEC. 137. ASSISTANCE TO TREAT HYDROCEPHALUS AND TRAIN SURGEONS.

    ``(a) Purposes.--The purposes of assistance authorized by this 
section are--
            ``(1) to ensure that life-saving treatment of hydrocephalus 
        is an important priority of United States bilateral foreign 
        assistance, including through promotion of innovative 
        treatments and training of medical practitioners from the 
        developing world in the latest treatment protocols and best 
        practices for the treatment of hydrocephalus, including--
                    ``(A) surgery and post-surgery care in developing 
                countries;
                    ``(B) the creation of a comprehensive hydrocephalus 
                training program based in the developing world for 
                surgeons and key members of their medical team; and
                    ``(C) the training of medical practitioners based 
                in the developing world in ETV/CPC and other 
                appropriate treatment protocols; and
            ``(2) to promote research to reduce the incidence of PIH 
        epidemiology, pathophysiology, and disease burden, and to 
        improve treatment of hydrocephalus.
    ``(b) Authorization.--To carry out the purposes of subsection (a), 
the President is authorized to provide assistance to support a network 
of trained medical practitioners to treat hydrocephalus in children at 
pediatric hospitals and hydrocephalus treatment centers in developing 
countries with a high incidence of hydrocephalus.
    ``(c) Activities Supported.--
            ``(1) Comprehensive program.--
                    ``(A) In general.--Assistance provided under 
                subsection (b) shall, to the maximum extent 
                practicable, be used to establish a comprehensive 
                program to administer global hydrocephalus treatment 
                and training activities utilizing a network of 
                pediatric hospitals capable of performing endoscopic 
                surgery in developing countries.
                    ``(B) Administration.--The program described in 
                subparagraph (A) shall be administered by healthcare 
                executives and neurosurgeons with expertise in the 
                treatment of hydrocephalus.
                    ``(C) Responsibilities.--The responsibilities of 
                the administrators described in subparagraph (B) shall 
                include--
                            ``(i) developing an appropriate education 
                        and training curriculum;
                            ``(ii) establishing quality control 
                        standards;
                            ``(iii) instituting safety guidelines and 
                        standards; and
                            ``(iv) developing monitoring and evaluation 
                        protocols.
            ``(2) Training hospital.--
                    ``(A) In general.--Assistance provided under 
                subsection (b) shall, to the maximum extent 
                practicable, be used to establish a surgeon training 
                program within a pediatric hospital based in a 
                developing country with a high incidence of 
                hydrocephalus with the goal of training four surgeons 
                annually and a total of 20 surgeons over a 5-year 
                period to treat hydrocephalus utilizing the ETV/CPC 
                technique.
                    ``(B) Timeline.--To the maximum extent practicable, 
                the surgeon training program described in subparagraph 
                (A) should be operational no later than 1 year after 
                the date of enactment of this Act.
                    ``(C) Training admissions criteria.--Candidates for 
                the surgeon training program established under 
                subparagraph (A) shall--
                            ``(i) have a demonstrated commitment to 
                        providing medical assistance in the developing 
                        world; and
                            ``(ii) certify that the candidate intends 
                        to remain and practice medicine in the 
                        developing world following completion of the 
                        program.
                    ``(D) Training program methodology.--The surgeon 
                training program established under subparagraph (A) 
                shall--
                            ``(i) be conducted by a neurosurgeon with a 
                        minimum of 3 years of full-time operating 
                        experience in the developing world;
                            ``(ii) be a hands-on operating room 
                        experience in the developing world;
                            ``(iii) utilize a hydrocephalus treatment 
                        protocol with an emphasis on ETV/CPC as the 
                        preferred treatment when medically appropriate; 
                        and
                            ``(iv) require that each trainee complete a 
                        minimum of 50 ETV/CPC or ETV procedures and at 
                        least 25 VP shunt procedures.
            ``(3) Treatment centers.--
                    ``(A) In general.--Assistance provided under 
                subsection (b) shall, to the maximum extent 
                practicable, be used to establish at least 20 
                hydrocephalus treatment centers located at public and 
                private hospital in developing countries with a high 
                incidence of hydrocephalus, which shall include 
                treatment costs, endoscopy equipment and medical 
                supplies necessary to provide ETV/CPC procedures to 
                treat hydrocephalus.
                    ``(B) Staffing.--The treatment centers described in 
                subparagraph (A) shall be staffed by--
                            ``(i) one or more surgeons who have 
                        successfully completed the surgeon training 
                        program provided pursuant to paragraph (2); and
                            ``(ii) a patient care administrator.
                    ``(C) Treatment.--The treatment centers described 
                in subparagraph (A) shall--
                            ``(i) provide surgery to treat 
                        hydrocephalus in children;
                            ``(ii) perform at least 50 hydrocephalus 
                        surgeries annually including a minimum of 25 
                        ETV or ETV/CPC surgeries; and
                            ``(iii) provide post-surgery care and 
                        support for the children treated in accordance 
                        with clause (i).
            ``(4) Medical records and data.--Assistance provided under 
        subsection (b) shall, to the maximum extent practicable, 
        include the maintenance of medical records which track patient 
        care activities and information about the causes and incidence 
        rates of PIH.
    ``(d) Definitions.--In this section:
            ``(1) CPC.--The term `CPC' means choroid plexus 
        cauterization, a surgical procedure to reduce the production of 
        cerebrospinal fluid in the brain.
            ``(2) ETV.--The term `ETV' means endoscopic third 
        ventriculostomy, a shunt-less surgical procedure in which an 
        opening is created in the floor of the third ventricle of the 
        brain allowing cerebrospinal fluid to bypass any obstruction 
        and flow directly to the basal cisterns.
            ``(3) ETV/CPC.--The term `ETV/CPC' means the shunt-less 
        surgical method for treating hydrocephalus through the 
        combination of ETV and CPC surgical procedures.
            ``(4) Hydrocephalus.--The term `hydrocephalus' means a 
        medical condition in which an abnormal accumulation of 
        cerebrospinal fluid in the ventricles or cavities of the brain 
        causes increased intracranial pressure inside the skull and 
        progressive enlargement of the head.
            ``(5) Medical practitioners.--The term `medical 
        practitioners' means physicians, nurses and other clinicians.
            ``(6) PIH.--The term `PIH' means post-infectious or 
        acquired hydrocephalus which is the onset of hydrocephalus 
        after birth due to the affects of an infection, such as 
        meningitis, that has attacked the brain.
            ``(7) VP shunt.--The term `VP shunt' means a 
        ventriculoperitonea shunt which is a plastic tube that is 
        regulated by a valve and surgically placed in a brain ventricle 
        that allows the cerebrospinal fluid to flow out of the brain 
        through the tube and into the patient's abdomen.
    ``(e) Authorization of Appropriations.--Of the amounts made 
available to carry out this chapter for child survival and maternal 
health programs, there are authorized to be appropriated to the 
President such sums as may be necessary for each of the fiscal years 
2014 through 2018 to carry out this section.''.
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