Esta ley enmienda la Ley Núm. 237 de 1999 para autorizar al Recinto de Ciencias Médicas de la Universidad de Puerto Rico a realizar investigaciones, estudios y pruebas médicas para el diagnóstico temprano y tratamiento de la enfermedad de Alzheimer, y para incluir los casos diagnosticados en el Registro de Casos de la Enfermedad de Alzheimer del Departamento de Salud. También autoriza estudios postmortem del tejido cerebral.
(Approved September 16, 2004)
To amend Section 7 of Act No. 237 of August 15, 1999, which establishes an Alzheimer's Disease Case Register at the Department of Health of the Commonwealth of Puerto Rico, in order to authorize the Medical Sciences Campus of the University of Puerto Rico to conduct the research projects and studies necessary for diagnosis and the ensuing inclusion of cases of said disease into said register.
Alzheimer's disease is regarded as one of the most serious threats to the health and adequate quality of life of the entire society, since it is characterized by the slow and painful degeneration of brain cells, which gravely affects patients of this disease and their families as well, for they have to see their loved one deteriorating progressively. This is a disease that unmercifully attacks our elderly population.
In Puerto Rico, it is estimated that there are over thirty thousand $(30,000)$ people afflicted with this disease, and the costs for each patient are calculated to range between one hundred fifty thousand $(150,000)$ and one hundred sixty thousand $(160,000)$ dollars. This does not include the assistance that their closest relatives need and require.
Be it noted that Alzheimer's patients may live twenty-five (25) years or more with this condition and that, in most cases, they receive direct or indirect assistance from the Government in order to be able to handle a
situation which could be catastrophic. Of course, the magnitude of and growth projections for this disease present a matter that deserves our closest attention and our most decided efforts.
Given this state of affairs, Act No. 13 of January 8, 1998, established at the Department of Health the "Services Coordination Center for Persons Affected by Alzheimer's Disease in Puerto Rico" as the specific instrument to be responsible for the development of integrated assistance plans for the services required by such patients, as well as the appropriation of the funds needed for these purposes. Subsequently, Act No. 237 was approved on August 15, 1999, establishing the "Register of Cases of Alzheimer's Disease at the Department of Health of the Commonwealth of Puerto Rico," which belongs to the aforementioned Center.
The legal framework described above seeks to enable the quantification of Alzheimer's disease cases in our Island in order to be able to effectively direct the alternatives for fighting this terrible disease. Specifically, it is imperatively provided that any physician who delivers a diagnosis of Alzheimer's disease shall report it to the Department of Health in order for the case to be recorded in the Register. This information identifies all detected cases and makes it possible for research and studies to be conducted on this enigmatic disease in order to have a better understanding and to attain valuable solutions to fight it, for the sake of everybody's well-being.
However, it must be mentioned that the wording of the provisions of Section 7 of Act No. 237, supra, seems to contravene these efforts, for it limits the Medical Sciences Campus of the University of Puerto Rico in that, upon death of a person who was diagnosed to have Alzheimer's or an analogous disease, it may only conduct postmortem testing on brain tissue,
but it can neither conduct studies or research nor apply techniques that would help identify or diagnose living persons who present symptoms of the disease. This is compounded by the fact that these postmortem brain biopsies are not currently being conducted in Puerto Rico.
This limitation on the use of appropriated funds upsets the main purpose of inserting the resources of the Campus for the early detection and treatment of this health issue, which would undoubtedly help to reduce the morbidity and mortality rates as well as the excessive suffering of both Alzheimer's patients and the persons in charge of their care.
In that sense, we believe the amendment of Section 7 of Act No. 237, supra, to be fundamental, in order to authorize the Medical Sciences Campus of the University of Puerto Rico to conduct, in coordination and mutual agreement with the Department of Health, testing and studies as necessary to diagnose and subsequently include cases of this disease in the Register. Naturally, we are thus recognizing the value and the effective use of the expertise, capability, and knowledge of the medical staff of this highly respected institution in the field of health in Puerto Rico, which is a fundamental and indispensable part in this fight.
Section 1.-Section 7 of Act No. 237 of August 15, 1999, is hereby amended to read as follows: "Section 7.- The Medical Sciences Campus of the University of Puerto Rico is hereby authorized to conduct, in coordination and mutual agreement with the Department of Health, the necessary research projects, studies, or medical tests on persons who have so authorized and have been referred by a physician to allow for the early and adequate diagnosis, detection or treatment of the Alzheimer's disease. The fiscal resources
designated from any source for the purposes of conducting the necessary research projects, studies, or medical tests on persons who have so authorized and are referred by a physician to allow for the early and adequate diagnosis, detection or treatment of the Alzheimer's disease, shall be under the custody, control, and oversight of the Department of Health. Once these tests have been conducted and the disease has been diagnosed, the patient shall be entered in the Register. The Medical Sciences Campus of the University of Puerto Rico is further authorized to conduct a thorough examination and analytical study of the brain tissue affected or deteriorated by Alzheimer's disease upon the death of a person medically diagnosed as suffering from said disease or an analogous disease, if authorized in writing by the deceased or the person legally authorized to dispose of his/her body. It is furthermore provided that the cost of this postmortem cerebral biopsy diagnostic procedure be defrayed from the funds appropriated to the Medical Sciences Campus of the University of Puerto Rico for such purposes."
Section 2.—This Act shall take effect immediately after its approval.
I hereby certify to the Secretary of State that the following Act No. 368 (H.B. 4478) of the $7^{ ext {th }}$ Session of the $14^{ ext {th }}$ Legislature of Puerto Rico:
AN ACT to amend Section 7 of Act No. 237 of August 15, 1999, which establishes an Alzheimer's Disease Case Register at the Department of Health of the Commonwealth of Puerto Rico, in order to authorize the Medical Sciences Campus of the University of Puerto Rico to conduct the research projects and studies necessary for diagnosis and the ensuing inclusion of cases of said disease into said register, has been translated from Spanish to English and that the English version is correct.
In San Juan, Puerto Rico, today $8^{ ext {th }}$ of June of 2006.
Francisco J. Domenech Director