{"id":518192,"date":"2026-07-27T22:45:39","date_gmt":"2026-07-28T02:45:39","guid":{"rendered":"https:\/\/deultimominuto.net\/en\/uncategorized\/public-health-advances-in-coverage-and-access-to-treatment-for-children-with-spinal-muscular-atrophy\/"},"modified":"2026-07-27T22:45:39","modified_gmt":"2026-07-28T02:45:39","slug":"public-health-advances-in-coverage-and-access-to-treatment-for-children-with-spinal-muscular-atrophy","status":"publish","type":"post","link":"https:\/\/deultimominuto.com\/en\/dominican-news\/public-health-advances-in-coverage-and-access-to-treatment-for-children-with-spinal-muscular-atrophy\/","title":{"rendered":"Public Health advances in coverage and access to treatment for children with spinal muscular atrophy"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Santo Domingo.- <strong>The Ministry of Public Health<\/strong> continues to advance in the <a href=\"https:\/\/www.presidencia.gob.do\/noticias\/salud-publica-avanza-en-la-cobertura-y-acceso-tratamiento-para-ninos-con-atrofia-muscular\" target=\"_blank\" rel=\"noopener\">implementation<\/a> of <strong>coverage<\/strong> for children with <strong>spinal muscular atrophy (SMA),<\/strong> as part of the actions aimed at guaranteeing <strong>timely and continuous access<\/strong> to treatment. In this context, the Minister of Health, <strong>V\u00edctor Atallah<\/strong>, held a meeting with parents of children living with this condition, whom he informed about the progress achieved and the measures currently underway to ensure the <strong>care and therapeutic continuity<\/strong> of the patients.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">During the meeting, the head of Health explained that, after months of <strong>technical, administrative, and inter-institutional coordination<\/strong> work, a mechanism was established that will allow for <strong>ensuring the availability<\/strong> of the medication for children with this condition, through the <strong>High-Cost Medication Program<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Atallah highlighted that this process represents a <strong>historic breakthrough<\/strong> for the Dominican healthcare system, by guaranteeing for the first time an <strong>organized and sustainable coverage<\/strong> for patients with SMA, a low-incidence disease, but whose treatment represents a <strong>high economic burden for families.<\/strong>  <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>We recommend reading:<a href=\"https:\/\/deultimominuto.com\/nacionales\/ministerio-salud-refuerza-campana\/\">Minister of Health reinforces the &#8220;Let&#8217;s Beat Dengue&#8221; campaign after impacting more than a million people<\/a><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>\u201cThe important thing is that today we have the solution. \u201cThe medication is already in the country and will be distributed with the support of the specialists handling these cases, ensuring that the children are covered while the full order arrives to maintain the continuity of the treatment,\u201d <\/em>the minister stated. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">He reported that there are already <strong>12 doses available<\/strong> in the national territory to begin delivery to patients, while the acquisition process for <strong>another 70 doses<\/strong> is being completed, which will ensure coverage <strong>throughout the year<\/strong> using the funds allocated for these high-cost treatments.  <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The official explained that the management involved overcoming various administrative and legal processes, as well as coordinating with <strong>international suppliers<\/strong> to expedite the arrival of the medication and <strong>avoid interruptions<\/strong> in the children&#8217;s therapy.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>\u201cAs a doctor and as a minister, seeing the suffering of a family with a sick child is difficult. This was not an improvised action, it was constant work to find a sustainable solution that protects these children and those who may be diagnosed in the future,\u201d<\/em> stated Atallah.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">During the meeting, it was also highlighted that the Dominican Republic joins a <strong>select group of countries<\/strong> in Latin America that have managed to guarantee <strong>free access<\/strong> to therapies for SMA patients within the <strong>public health system.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The meeting was attended by the director of the Directorate of Access to High-Cost Medications (Damac), <strong>Dr. Carlos S\u00e1nchez<\/strong>, who oversaw the coordination process to ensure the <strong>inclusion<\/strong> of patients and the <strong>timely availability<\/strong> of the required treatments.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">S\u00e1nchez explained to the families the process that will follow for the <strong>formal incorporation<\/strong> of each patient, including the <strong>review of records and coordination<\/strong> for the delivery of the medication according to the corresponding medical instructions.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dr. Mar\u00eda G\u00f3mez<\/strong>, the pediatric neurologist in charge of the <strong>clinical follow-up<\/strong> of the cases, expressed her gratitude for the monitoring provided to the patients and families affected by this disease. <em>\u201cI take my hat off to you and I am enormously grateful for the great effort that you and the president have made so that patients with SMA can receive treatment,\u201d<\/em> G\u00f3mez expressed.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Also present were: <strong>Ronel Jim\u00e9nez<\/strong>, father of Laia and Leire; <strong>Daniel Rosario<\/strong>, father of Danelys and Dael, and <strong>Fiderca Lora<\/strong>, president of the C\u00farame Foundation and mother of Liz Melina and Liz Melinda, who expressed their <strong>gratitude for the efforts made<\/strong> and stated that this decision represents a new hope for children with SMA and their families. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><em>\u201cWe, as parents, Minister, thank you and the entire ministry very much for your efforts,\u201d<\/em> expressed <strong>Daniel Rosario.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The parents highlighted the importance of the country moving towards mechanisms that allow for <strong>timely diagnoses, continuous access to medication, and greater support<\/strong> for those living with rare diseases. The minister reiterated his commitment to maintaining a <strong>permanent monitoring table<\/strong> together with families and specialists, with the goal of ensuring that <a href=\"https:\/\/deultimominuto.com\/internacionales\/espana-aprueba-endurecer-la-ley-antitabaco-que-prohibe-fumar-en-terrazas-y-playas\/\"><strong>no<\/strong><\/a><strong> child with SMA is left without access<\/strong> to treatment due to a lack of medication.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Santo Domingo.- The Ministry of Public Health continues to advance in the implementation of coverage for children with spinal muscular atrophy (SMA), as part of the actions aimed at guaranteeing timely and continuous access to treatment. In this context, the Minister of Health, V\u00edctor Atallah, held a meeting with parents of children living with this [&hellip;]<\/p>\n","protected":false},"author":133556,"featured_media":518193,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[40216],"tags":[41054],"class_list":["post-518192","post","type-post","status-publish","format-standard","has-post-thumbnail","category-dominican-news","tag-public-health"],"acf":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/phj1q1-2aNW","jetpack_featured_media_url":"https:\/\/deultimominuto.com\/en\/wp-content\/uploads\/sites\/2\/2026\/07\/9d59d4dd-88b4-400c-894b-743ab994d49b.jpg","dum_api":{"author_name":"Yerandi Santana","author_image":"https:\/\/deultimominuto.com\/wp-content\/uploads\/2026\/02\/cropped-WhatsApp-Image-2026-02-13-at-5.35.07-PM-96x96.jpeg","categories_name":["Dominican News"],"featured_media_url":"https:\/\/cdn.deultimominuto.com\/en\/wp-content\/uploads\/sites\/2\/2026\/07\/9d59d4dd-88b4-400c-894b-743ab994d49b.jpg"},"_links":{"self":[{"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/posts\/518192","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/users\/133556"}],"replies":[{"embeddable":true,"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/comments?post=518192"}],"version-history":[{"count":0,"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/posts\/518192\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/media\/518193"}],"wp:attachment":[{"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/media?parent=518192"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/categories?post=518192"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/deultimominuto.com\/en\/wp-json\/wp\/v2\/tags?post=518192"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}