概述
什么是 α-1 抗胰蛋白酶缺乏症？
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.
对于您的 α-1 抗胰蛋白酶缺乏症治疗有任何问题？
您可以随时通过电话或网络与 Accredo α-1 抗胰蛋白酶缺乏症团队取得联系，该团队全天不间断服务。
24 小时客户服务中心
Aralast® NP, Glassia®, Zemaira®: 866-6-ALPHA1 or 866.625.7421
Prolastin Direct®: 833.PHONEA1 or 833-746-6321
症状
α-1 抗胰蛋白酶缺乏症有哪些症状？
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. 不幸的是，α-1 缺乏症通常是在出现严重的组织损害或患者被诊断出肺气肿、慢性阻塞性肺病或耐药性哮喘才被发现。这就是测试如此重要的原因。α-1 缺乏症的一些最常见的迹象包括但不限于以下症状。
肺
- Cough, often with mucus
- 疲劳
- Recurrent chest colds
- 呼吸短促
- 气喘
肝脏
- 腹部肿胀和/或腿部肿胀
- 剧烈瘙痒
- 眼睛和皮肤的黄疸（发黄）
- 右上腹部疼痛或压痛
- Blood in stool or vomiting blood
皮肤
- Raised, often painful, red lumps that can break open and leak fluid (panniculitis)
如何诊断？
可以通过确定血液中 AAT 水平的简单测试来检测 α-1。
Various medical societies have recommended guidelines on who should be tested for alpha-1. These include those with:
- 慢性阻塞性肺病
- 不明原因的肝脏疾病
- Unexplained panniculitis
- Family history of alpha-1
- 1Alpha-1 Foundation Accessed 11 Mar. 2024.
药品
α-1 抗胰蛋白酶缺乏症
以下特殊药品可在您的特殊药房 - Accredo 获取，以用于治疗 α-1 抗胰蛋白酶缺乏症。
节约护理费用
您还可获得经济援助协调服务，以承担您的部分药品费用，包括生产商和社区计划。Accredo 代表可以帮助您找到适合您的计划。
- 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
财政指导
查找支持
有许多组织为 α-1 抗胰蛋白酶缺乏症的研究和宣传提供支持。下面是其中部分组织。
支持组织
政府组织
- 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)
资源
- At-home saliva testing: AlphaID™ At Home Genetic Health Risk Test Kit: Home (geneticcopdtest.com)
团队介绍
Accredo α-1 抗胰蛋白酶缺乏症团队致力于为您服务，并且了解您病症的复杂性。我们的特殊培训临床医师每周 7 天、每天 24 小时为您提供服务，以回答您的任何问题。
我们为什么要这样做
Accredo 为慢性和复杂病症患者提供支持，并帮助他们过上最好的生活。请观看我们的视频，了解我们为什么为患者尽心尽力。
24 小时客户服务中心
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.
24 小时客户服务中心
Prolastin Direct®: 833.PHONEA1 / 833-746-6321