Home » Global Health, Global Health Projects

Proposed Bleeding Disorder Bill

January 11th, 2010

Open Questions:

1) What would be the most effective, politically feasible form for a bill implementing the von Willebrand’s screening recommendations of H.Con.Res.147?

2) Will any new, substantial additions to the healthcare reform package be made over the next month?  If so, how feasible would it be for a Member to include this bill as an amendment?  If not, I’m looking for other moving bills, to which this bleeding disorder bill could be attached.

*****
Please read the Discussion Draft of the bill below, or click on this link to view a PDF of the Discussion Draft:  Bleeding Disorders – Discussion Draft[1].
*****

A BILL

To authorize the Secretary of Health and Human Services to conduct programs to screen adolescents, and educate health professionals, with respect to bleeding disorders.

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 ‘‘[ ] Act of 2009’’.

SEC. 2. FINDINGS.

The Congress finds as follows: [TBA]

SEC. 3. ADOLESCENT SCREENING PROGRAMS.

(a) IN GENERAL.—The Secretary of Health and Human Services (in this Act referred to as the ‘‘Secretary’’), directly or through the award of grants or contracts to States, political subdivisions of States, or other public or nonprofit private entities, shall carry out the following activities:

(1) Development of a verbal screening tool to use in the
diagnosis of bleeding disorders in adolescents.

(2) As widely as possible in adolescent populations—

(A) use of the verbal screening tool developed under
paragraph (1) and other screening tools relevant to the
diagnosis of bleeding orders in adolescents;

(B) if screening suggests the possibility of a bleeding
disorder, provision of further laboratory-based diagnostic
testing; and

(C) provision of referrals for medical services regarding
bleeding disorders.

(b) PRIORITY.—In awarding any grant or contract under subsection (a), the Secretary shall give priority to applicants proposing to provide screening to high school or institution of higher education students.

(c) TECHNICAL ASSISTANCE.—The Secretary, directly or through grants or contracts, may provide recipients of grants or contracts under subsection (a) with technical assistance regarding the planning, development, and implementation of activities under such subsection.

(d) AUTHORIZATION OF APPROPRIATIONS.—To carry out this section, there is authorized to be appropriated [to be determined]

SEC. 4. INCREASING AWARENESS AMONG HEALTH PROFESSIONALS.

(a) IN GENERAL.—The Secretary, directly or through the award of grants or contracts to States, political subdivisions of States, or other public or nonprofit private entities, shall conduct an education campaign to increase awareness about bleeding disorders among health professionals.

(b) PRIORITY.—In awarding any grant or contract under section (a), the Secretary shall give priority to applicants proposing to increase awareness about bleeding disorders among—

(1) health professionals, such as primary care physicians, who
commonly provide medical care for the adolescent population; or

(2) obstetricians and gynecologists.

(c) TECHNICAL ASSISTANCE.—The Secretary, directly or through the award of grants or contracts, may provide recipients of grants or contracts under subsection (a) with technical assistance regarding the planning, development, and implementation of activities under such subsection.

(d) AUTHORIZATION OF APPROPRIATIONS.—To carry out this section, there is authorized to be appropriated [to be determined]

SEC. 5. REPORT.

(a) IN GENERAL.—Not later than [ ] after the date of the enactment of this Act, the Secretary shall submit to the Congress a report on the results of activities under this Act.

(b) CONTENTS.—At a minimum, the report under subsection (a) shall—

(1) catalog, with respect to bleeding disorder screening and
health professional education—

(A) the activities of the Federal Government, including an
assessment of the progress achieved under this Act;

(B) the portion of students in United States high schools
and institutions of higher education who have received some
form of screening for bleeding disorders as a result of programs
under this Act; and

(C) the number of health professionals who have received
some form of bleeding disorder education as a result of
programs under this Act; and

(2) make recommendations for the future direction of bleeding
disorder activities, including—

(A) a description of how the Federal Government, as well
as recipients of grants and contracts under this Act, may
improve their screening and education programs to increase
bleeding disorder diagnostic rates, including the identification
of steps that may be taken to reduce—

(i) the prevalence of undiagnosed bleeding disorders;
and

(ii) the burden of bleeding disorders as a chronic
condition;

(B) an identification of organizations that have most
effectively and efficiently increased bleeding disorder screening
rates;

(C) an identification of programs and procedures that have
most effectively and efficiently increased bleeding disorder
screening rates, and steps that may be taken to expand such
programs and policies to benefit larger populations; and

(D) recommendations for future research and interventions.

*****
The bill has evolved from a concurrent resolution, H.Con.Res.147, introduced to Congress over the summer by Representative Carolyn McCarthy and included below.
*****

H. CON. RES. 147

    Expressing the sense of Congress regarding people in the United States with bleeding disorders.

IN THE HOUSE OF REPRESENTATIVES

June 11, 2009

Mrs. McCarthy of New York (for herself, Mr. Bishop of Georgia, Ms. Kilpatrick of Michigan, Mr. LoBiondo, Mr. Cummings, Ms. Baldwin, and Ms. Bordallo) submitted the following concurrent resolution; which was referred to the Committee on Energy and Commerce


CONCURRENT RESOLUTION

Expressing the sense of Congress regarding people in the United States with bleeding disorders.

    Whereas the lives of millions of people in the United States are impacted by both congenital and inherited bleeding disorders as patients, asymptomatic carriers, and caregivers;
    Whereas studies estimate that as many as 1 in 50 people in the United States suffer from von Willebrand’s disease, making it the most common inherited bleeding disorder in the United States;
    Whereas von Willebrand’s disease is characterized by frequent nosebleeds, recurrent bleeding from the mouth and gums often resulting in periodontal disease, swollen and painful joints, gastrointestinal bleeding, excessive bruising, postoperative bleeding, prolonged bleeding following minor injury, and menorrhagia (excessive menstrual bleeding);
    Whereas studies estimate that 13 to 20 percent of women in the United States diagnosed with menorrhagia suffer from von Willebrand’s disease;
    Whereas an accurate diagnosis of von Willebrand’s disease is sometimes difficult to obtain given current standard laboratory testing techniques, and, as a result, the majority of people in the United States who suffer from von Willebrand’s disease remain undiagnosed;
    Whereas failure to correctly diagnose von Willebrand’s disease in women may lead to unnecessary hysterectomies resulting in increased risk from bleeding at the time of surgery;
    Whereas effective medical treatments are available for von Willebrand’s disease when it is diagnosed properly;
    Whereas the onset of von Willebrand’s disease symptoms usually occurs during adolescence and the symptoms can remain undiagnosed for several years;
    Whereas programs designed to increase screening for von Willebrand’s disease in adolescents could greatly improve diagnosis;
    Whereas the Current Population Study estimates that 67 percent of high school graduates enroll in institutions of higher education;
    Whereas prior to entering institutions of higher education, students have to receive a physical examination and meet immunization requirements; and
    Whereas including a verbal screening tool for von Willebrand’s disease as part of the medical requirement for entrance into institutions of higher education would increase early diagnosis, improve treatment, and lead to better health outcomes: Now, therefore, be it

Resolved by the House of Representatives (the Senate concurring), That it is the sense of Congress that—

(1) the Federal Government has a responsibility to—

(A) further the research that is needed to identify a more accurate laboratory test for von Willebrand’s disease;

(B) increase funding for biomedical and psychosocial research on von Willebrand’s disease, rare blood disorders, and hemophilia;

(C) continue to improve access to treatment centers for all individuals with bleeding disorders;

(D) improve public education and awareness of bleeding disorders; and

(E) support screening for von Willebrand’s Disease as an aspect of the health requirements of all institutions of higher education;

(2) the Director of the National Institutes of Health should take a leadership role in the fight against bleeding disorders by acting through appropriate offices within the National Institutes of Health to provide Congress with a 5-year research plan for people with bleeding disorders;

(3) the Director of the Centers for Disease Control and Prevention should continue the critical role of the Centers in improving outreach about, treatment for, and prevention of the complications of people with bleeding disorders by facilitating an educational relationship between treatment centers, university health clinics, and undergraduate student populations;

(4) referral of a person with a bleeding disorder to a federally sponsored hemophilia treatment center is critical to comprehensive treatment of people with bleeding disorders;

(5) physicians should screen all women presenting with menorrhagia, especially severe menorrhagia, for von Willebrand’s disease;

(6) patient advocate organizations and medical specialty societies should continue to collaborate on public education campaigns to educate people about bleeding disorders; and

(7) physicians should screen all adolescents attending institutions of higher education for von Willebrand’s disease.


Global Health, Global Health Projects


Leave a Reply