Assistance Resources

If you are an Alpha-1 patient and your insurance company has denied your augmentation therapy prescription, or if your insurance company will no longer provide coverage for your augmentation therapy, please contact Barbee Bennington, Support Group & Program Coordinator, at bbennington@alpha1.org or 1-855-351-6610.



Assistance


The Ann Marie Benzinger Emergency Assistance Fund, established in 2013 through a collaboration agreement joining the Alpha-1 Association's program and the Alpha-1 Advocacy Alliance's program, is a fund designed to provide a valuable lifeline to those affected by Alpha-1 who find themselves in need of emergency financial assistance. This fund, named after Ann Marie Benzinger, an Alpha dedicated to helping others, will assist those in the Alpha-1 Community facing financial stress and those who are unable to pay for basic needs such as prescriptions, utilities, or expenses to travel to a transplant center. Funding is provided through unrestricted grants from our industry partners - Baxter Healthcare, CSL Behring and Grifols. All information is confidential. Individuals seeking assistance through this program should contact their local patient coordinator, patient advocate or support group leader for a referral or contact the Alpha-1 Association directly at 877.346-3212.


Insurance Assistance


Access and Reimbursement Web Portal

A central resource for information on access to care and reimbursement issues for Alphas who require assistance to ensure access to FDA-approved augmentation therapy products in the United States.


Patient Services Incorporated 

https://www.patientservicesinc.org/

Offers funding to Alphas and other groups to help cover insurance premium cost and co-pays for those on augmentation therapy. 1-800-366-7744

 

A.C.C.E.S.S.

A service provided by PSI that provides Social Security and disability representation to patients diagnosed with Alpha-1 and helps educate them on Social Security Disability, Supplemental Security Income, Medicare and Medicaid. Contact the PSI A.C.C.E.S.S.® staff at 1-888-700-7010.


CareZ 

http://www.zemaira.com/consumer/carez/default.aspx

CSL Behring created CareZ—a community of people and services focused on providing the support you need to help you cope with your condition and help you live your life to the fullest. At CareZ, you'll find information on Financial support, including insurance assistance, cost-sharing programs, and the CSL Behring AssuranceSM program, emotional support, including Patient Support Specialists and Personal Mentors, physical fitness, including the My Steps for Healthy Living program and the causes, genetics, and treatment of Alpha-1. 888. 415-2167

 

Caring Voice Coalition

http://www.caringvoice.org/

Empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, their knowledgeable, caring staff maintains a solid reputation as a dependable, responsive organization with a unique approach to improving the lives of our patients. 1-888-267-1440

 

Families USA

http://www.familiesusa.org/resources/program-locator

The Voice for Healthcare Consumers is a nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans since 1982. Families USA has worked to promote high-quality, affordable health care for all Americans. Their program locator can assist in locating other types of consumer assistance.

 


 

Other Assistance

 

Your therapy provider or the manufacture most likely has a division or third party group that is designed to assist you with insurance issues and appeals.

 

Each state has a bureau that could be contacted for assistance. They would have names such as: Insurance Commission office; Department of Insurance; Health Insurance Division Consumer Service; Department of Insurance Consumer Services; Office of Insurance Regulation, etc.

 


 

Prescription Assistance


NeedyMeds.com

http://www.needymeds.com/

  • Offers resources designed to teach about patient assistance programs and other programs designed to help those who can't afford their medicines

 

RX List

http://www.rxlist.com/

  •  The internet drug index

 

 RX Hope

http://www.rxhope.com/

  •  Includes information and application forms for Patient Assistance Programs Toll free: 1 (877) 267-0517

 

 Partnership for Prescription Assistance

http://www.pparx.org/

  • Helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them.  Toll free: 1 (888) 477-2669

 

 Patient Medication Assistance Inc

http://www.patientmedicationassistance.com

  •  Assists individuals receive free medications through Patient Assistance programs.

 Toll free: 1 (866) 353-9377

 

 Free Medicine Foundation

http://www.freemedicinefoundation.com/

  •  Assistance to pay for brand name FDA approved medications regardless of  age or employment. Call 1 (573) 996-3333

 

Free Medicine Program

http://www.freemedicineprogram.org/

  • Assists patients in obtaining prescription drugs and medications free of charge.


Walgreens

http://www.walgreens.com/healthcare/business/ProductOffering.jsp?id=infusion_services

  • Walgreens offers access to infusion services while offering a consistent, high quality of care by clinicians who live in the communities they serve. Their teams partner with payers to transition patients to the most clinically appropriate, cost-effective site of care-delivering proven outcomes, high patient satisfaction and cost savings. 877.727.9247

 


 

Advocacy Organizations 

 

Volunteers in Health Care

http://healthcarevolunteer.com/

  • Provides a practical guide to Patient Assistance Programs

 

Patient Advocate Foundation

http://www.patientadvocate.org/

  • Provides effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses. This service pairs the patient with a case manager who will assist the patient with their needs. Toll free: 1 (800) 532-5274

 

Advocacy for Patients with Chronic Illness

http://advocacyforpatients.org/

  • Assists patients with free information, advice and advocacy services in areas including but not limited to the following: getting your own medical records; health insurance; private disability insurance coverage; Social Security Disability Income; your rights under the Americans with Disabilities Act; rights under the Family and Medical Leave Act and how to ensure that schools accommodate students with chronic illnesses. 

Toll free 1 (860) 674-1370

 

Families USA: 

http://www.familiesusa.org/resources/program-locator/

  •  The Voice for Healthcare Consumers is a nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans since 1982. Families USA has worked to promote high-quality, affordable health care for all Americans. Their program locator can assist in locating other types of consumer assistance.


The Kaiser Family Foundation

Kaiser is a non-profit, private operating foundation focusing on the major health care issues facing the United States. Kaiser serves as a non-partisan source of facts, information, analysis and journalism for policymakers, the media, the health care community, and the public. Their product is information, always provided free of charge. http://kff.org/about-us/

 

The National Health Council

 

The National Health Council (NHC) is the only organization of its kind that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers. Their mission is to provide a united voice for people with chronic diseases and disabilities. 1 (202) 785-3910 or http://www.nationalhealthcouncil.org/

 


 

Government Resources 


Guide to Disability Rights Laws Americans with Disabilities Act Q and A

A Guide to Disability Rights Laws

Americans with Disabilities Act Q & A

 


Healthcare.gov

http://www.healthcare.gov

  • A federal government website managed by the U.S. Department of Health & Human Services with the initiative to educate Americans about the Affordable Care Act that was signed into law two years ago on March 23, 2010. The website has a tool to find individual state’s Consumer Assistance Programs, where they have been established and other help sources with health insurance problems. Website only: http://www.healthcare.gov

 

Health Resources and Services

http://www.healthcare.gov

  •  A referral source by US Department of Health and Human Services for community health centers that may offer prescription assistance

 

Medicare Assistance 

http://www.medicare.gov/default.aspx

  • Government resources for healthcare and prescription assistance

 


 

Independent Living Assistance


Center for Independent Living

http://www.cilberkeley.org/

  • Supports disabled people in their efforts toward independence. CIL encourages people with disabilities to make their own choices and works to open doors in the community to full participation and access for all.

 

Directory of Independent Living Centers

http://www.ilru.org/

Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects.

 


 

End of Life Issues


AARP's End of Life Guide

http://assets.aarp.org/external_sites/caregiving/end/internal_resources.html

  • Get information on estate planning, powers of attorney, hospice and palliative care

 

Department of Health and Human Services' Guide to End of Life Planning

http://www.ahrq.gov/research/endliferia/endria.htm

  • This guide contains lots of practical information about how to get one's affairs in order

 

End-of-Life Decision Making

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401

  • This guide from the Family Caregiver Alliance has helpful content for caregivers and patients alike