Staff members at Caring Voice Coalition have heard directly from many of you over the past few months about just how much you’ll miss the financial support received from us in 2018.
In the many years we’ve assisted people with life-threatening diagnoses, we’ve spent significant energy and time understanding the biggest needs patients face, and finding ways to help. So it makes sense that we now want to help identify ways to fill the gap left by our current inability to provide grant funding. One way we can immediately assist is to connect you with the many other financial assistance programs available.
Our health insurance counselors share with patients over the phone the potential sources of available funding as we learn about them. We are also updating content on our website on an ongoing basis and that information is available at: Helpful resources.
Additionally, we plan to publish a series of blogs over the next few weeks focused on offering our best tips on navigating financial issues during chronic illness. In this first blog entry, we want to explain the kinds of support organizations that exist and who might seek assistance from them in order to help you as you search. You may want to bookmark this information for future reference.
What are patient aid organizations?
A variety of organizations provide services for patients who need help managing their health conditions. Knowing which types of organizations exist, and what they each offer, can be confusing.
Try starting from the top, with a brief overview of the three arms of society through which we receive goods and services:
- Private sector (e.g., corporations, small businesses).
- Government sector (e.g., federal, state, local).
- Nonprofit sector (sometimes known as non-governmental organizations or NGOs).
Each of these sectors offers many different kinds of potentially useful resources, sometimes in combination with one another. Of the three, the types of organizations in the nonprofit sector can vary the most from each other. Nonprofit groups can be significantly different in purpose, structure and mission. Churches, small local groups, large foundations, some hospitals, and even lobbying organizations can fit within the nonprofit sector.
For people struggling with chronic health conditions, the most relevant nonprofit organizations are often “patient-centric”—or those that focus on the experience of a patient. To understand some general distinctions and how to identify available resources, please see below.
What are associations and advocacy groups?
In general, these nonprofit organizations tend to be disease-specific in focus and are often started by patients and their families who have experienced firsthand the unmet needs related to their health conditions. These organizations bring together like-minded individuals to identify funding and support sources, increase disease awareness, and advocate for increased education and other resources for specific patient communities and their families.
They usually do not provide direct financial assistance to patients. Rather, they offer non-financial resources, access to emotional support communities, and information related to living with your diagnosis. They often advocate on the state, local and national levels for funding prioritization and awareness for those living with or at-risk for the disease.
Examples include: Huntington’s Disease Society of America, Pulmonary Hypertension Association, Cutaneous Lymphoma Foundation, Cushing’s Support & Research Foundation, Epilepsy Foundation, Wake Up Narcolepsy, Hemophilia Federation of America.
What are patient assistance programs?
The exact meaning of the term “patient assistance” can confuse even the most seasoned of insider.
Surely many kinds of organizations aim to offer “assistance” to patients, the term “patient assistance programs” (PAPs) has become shorthand for those organizations that primarily focus on financial relief of the burden of high-cost medications.
PAPs come in many forms. Drug manufacturers may have their own programs for facilitating access to the products that they make. Independent PAPs may provide financial resources and easier access to a broader array of treatments for specific patient populations. These organizations are tax-exempt under section 501(c)(3) of the Internal Revenue Code, and therefore, must follow complex rules related to their operations. Because of this, they frequently seek guidance from regulators (such as the Office of the Inspector General within the U.S. Department of Health and Human Services) to make sure that their programs are run appropriately.
Each 501(c)(3) organization has its own set of requirements for determining which applicants may receive assistance. For example, some require patients to have basic insurance coverage or proof of medical diagnoses. Some also provide other non-financial assistive services to patients.
What are some other types of charitable foundations, nonprofits or assistive businesses?
A wide variety of additional organizations types also offer financial assistance to people whose diagnoses or need may not fit into a specific covered category. For more examples, please review information in the “Additional Resources” section of our helpful resources page
We think knowing more about any type of organization you plan to contact is important. If you locate a potential resource, you should research it through GuideStar or the Better Business Bureau prior to connecting with it to fully understand its purpose and reputation.
What other government agencies and programs exist?
Federal, state and local government agencies may offer public assistance to people who meet eligibility requirements, and this assistance may vary from program to program. Government programs usually prioritize people who are low-income, disabled, senior citizens or minors. You can find a list of all U.S. government benefits at USA.gov or by contacting a relevant government office.
Examples: SSDI (Social Security Disability Insurance), SSI (Supplemental Security Income), SNAP (the Supplemental Nutrition Assistance Program), LIHEAP (Low Income Home Energy Assistance Program) and Community Services Block Grants.
CVC health insurance counselors offer knowledgeable counseling on many types of government agencies and programs. Our patient advocates help people apply for and receive government benefits including Social Security Income and Social Security Disability Insurance. We will describe two government program—low-income subsidies and state-run pharmaceutical assistance programs (SPAPs).