Resumen
¿Qué es la deficiencia de alfa-1 antitripsina?
Alpha-1 antitrypsin deficiency is a genetic condition caused by the lack of a protein called alpha-1 antitrypsin (AAT). Without this protein, alpha-1 patients can develop lung and/or liver disease.
Alpha-1 is often misdiagnosed because the symptoms can be mistaken as chronic obstructive pulmonary disease (COPD) or even asthma.
It is estimated that about 100.000 people in the United States have alpha-1. This disease is present in all ethnic groups, but it is most common in those with Northern European ancestry. The prevalence of alpha-1 worldwide is thought to be about 1 in every 1.500 to 3.500 people of European ancestry.
¿Preguntas relacionadas con su terapia contra la deficiencia de alfa-1 antitripsina?
Puede comunicarse con su equipo de deficiencia de alfa-1 antitripsina de Accredo, en cualquier momento, de día o de noche, los siete días de la semana por teléfono o en línea.
Centro de Servicio al Cliente las 24 horas
Aralast® NP, Glassia®, Zemaira®: 866-6-ALPHA1 or 866.625.7421
Prolastin Direct®: 833.PHONEA1 or 833-746-6321
Síntomas
¿Cuáles son los síntomas de la deficiencia de alfa-1 antitripsina?
Alpha-1 can cause symptoms in various parts of the body, but symptoms are most commonly seen in the lung, liver or, in rare cases, the skin. Desafortunadamente, alfa-1 no suele descubrirse hasta que no haya un daño significativo en los tejidos o hasta que un paciente no haya sido diagnosticado con enfisema, enfermedad pulmonar obstructiva crónica o asma resistente al tratamiento. Por este motivo es tan importante hacer la prueba. Algunos de los signos más comunes de alfa-1 incluyen, entre otros, la siguiente lista de síntomas.
Pulmón
- Cough, often with mucus
- fatiga
- Recurrent chest colds
- Disnea
- Sibilancia
Hígado
- Hinchazón del abdomen o las piernas
- Prurito intenso
- Ictericia de los ojos y la piel (color amarillento)
- Dolor o sensibilidad en la parte superior derecha del abdomen
- Blood in stool or vomiting blood
Piel
- Raised, often painful, red lumps that can break open and leak fluid (panniculitis)
¿Cómo se diagnostica?
Es posible detectar la alfa-1 con un análisis simple que determina el nivel de alfa-1 antitripsina en la sangre.
Various medical societies have recommended guidelines on who should be tested for alpha-1. These include those with:
- Enfermedad pulmonar obstructiva crónica.
- Enfermedad hepática de causa desconocida.
- Unexplained panniculitis
- Family history of alpha-1
- 1Alpha-1 Foundation Accessed 11 Mar. 2024.
Medicamentos
Deficiencia de alfa-1 antitripsina
Los siguientes medicamentos especializados están disponibles en Accredo, su farmacia especializada, para el tratamiento de la deficiencia de alfa-1 antitripsina.
Financiación de su atención
Es posible que haya coordinación de asistencia financiera disponible para ayudar con los costos de sus medicamentos, incluidos programas de los fabricantes y programas comunitarios. Los representantes de Accredo están disponibles para ayudarlo a encontrar un programa que funcione para usted.
- Takeda Copay Assistance: OnePath | Financial Assistance
- CSL Copay Assistance: ZEMAIRA® | Alpha-1 Treatment Support
- Grifols Copay Assistance: PROLASTIN DIRECT® Program: Personalized Support for Patients
- Accessia Health: Patient Programs | Accessia Health
- The Assistance Fund: The Assistance Fund (tafcares.org)
- NORD Patient Assistance Program (RareCare): Patient Assistance Programs Archive - National Organization for Rare Disorders (rarediseases.org)
- Alpha-1 Foundation – Oxygen Travel Fund: Supplemental Oxygen - Alpha-1 Foundation (alpha1.org)
- Patient Advocate Foundation: Co-Pay Relief Program - Patient Advocate Foundation
Orientación financiera
Encuentre apoyo
Hay muchas organizaciones que apoyan la investigación y promoción de la deficiencia de alfa-1 antitripsina. Consulte a continuación algunas de estas organizaciones.
Organizaciones de apoyo
Organizaciones gubernamentales
- Centers for Medicare and Medicaid Services: Home - Centers for Medicare & Medicaid Services | CMS
- Food and Drug Administration for patients: U.S. Food and Drug Administration (fda.gov)
- The Voice of the Patient – Alpha-1 – A series of reports from the U.S. Food and Drug Administration’s Patient-Focused Drug Development Initiative: The Voice of the Patient: Patient-Focused Drug Development for Alpha-1 Antitrypsin Deficiency (fda.gov)
Recursos
- At-home saliva testing: AlphaID™ At Home Genetic Health Risk Test Kit: Home (geneticcopdtest.com)
Conozca al equipo
Su equipo de la deficiencia de alfa-1 antitripsina de Accredo se dedica a servirle y entiende la complejidad de su afección. Nuestros médicos clínicos con formación especializada están disponibles las 24 horas al día, los siete días de la semana, para responder cualquier pregunta.
Por qué lo hacemos
Accredo brinda apoyo a pacientes con afecciones crónicas y complejas, y los ayuda a vivir mejor su vida. Mire nuestro video para conocer por qué hacemos lo que hacemos por nuestros pacientes.
Centro de Servicio al Cliente las 24 horas
Aralast® NP, Glassia®, Zemaira®: 866-6-ALPHA1 or 866.625.7421
Prolastin Direct®: 833.PHONEA1 or 833-746-6321
Prolastin Direct® Patient Support Services team:
833.PHONEA1 or 833-746-6321
This dedicated team will assist with referral coordination for Prolastin patients that receive their infusions at home or at a medical facility. The team will also assist with answering any questions relating to the Prolastin Direct program and help connect you with AlphaNet.
Accredo’s team of pharmacists are highly trained in the world of alpha-1. They review prescriptions for any drug interactions that could happen based on other medications a patient may be taking. They are also available for medication counseling and help coordinate care with prescribers.
Accredo’s team of patient care advocates stay in close contact with our patients on a regular basis. They help to ensure you have the medication and supplies needed to administer your therapy and manage your condition.
The team of insurance and billing support representatives at Accredo are very knowledgeable about alpha-1 and the medication and supplies that are needed to manage the condition. They obtain approvals for your prescription from your insurance company (or payer) before shipping and help explain your insurance coverage.
Accredo’s program managers work very closely with all internal Accredo teams to ensure a seamless onboarding experience. Our program managers monitor all patient referrals’ progress to ensure our patients receive their medication as quickly as possible and will mitigate any issues that arise throughout the process.
Accredo’s nurse navigator team will be your initial point of contact for the Prolastin Direct program. They will review the program specifics and assist with coordinating your first shipment of Prolastin and supplies once the prior authorization is in place.
A financial clinical nurse supports Accredo’s insurance and billing representatives and assists prescribers and patients with prior authorizations and appeals by applying their extensive clinical knowledge for alpha-1 and the payer medical and pharmacy criteria. This ensures prior authorizations and appeals that are submitted provide the information required by your insurance company (or payer).
If you receive your infusions at home, an Accredo registered nurse will come to you to administer your medication.
Centro de Servicio al Cliente las 24 horas
Prolastin Direct®: 833.PHONEA1 / 833-746-6321