In prior years, people also would soon be calling CVC to apply for financial assistance. We want to remind you that in the wake of the Nov. 28, 2017, decision by the U.S. Department of Health and Human Services Office of Inspector General to rescind CVC’s Advisory Opinion, CVC is not offering financial assistance.

We know for some, nothing quite filled the hole left by those grants that were such an important lifeline. Whether you are still searching for similar resources or have other unmet chronic illness needs, our case managers want to guide and support you however possible. They are experts in tracking down the best resources for each individual. Just call CVC’s toll-free patient line between 9 a.m. and 6 p.m. ET at 888-267-1440. You also can view a list of the main financial resources we know about here.

We remain centrally concerned for people we know are still in need. We are carefully, thoughtfully developing a strategy that we look forward to sharing with you soon. In the meantime, we continue to provide health insurance and disability education and counseling for eligible patients. You can find more about those through our home page.

The post Preparing for open enrollment appeared first on Caring Voice Coalition.

In the nine months since becoming CEO of Caring Voice Coalition, Inc. (CVC), I have seen considerable resilience, durable empathy, and most incredibly, calm—from both patients as well as staff. People on both ends of the phone seem to share the quality of wanting to help others.

Patients’ stories, down to the details of awful choices some must make to get through to another day, are agonizingly raw. Despair is palpable. But so is a resoluteness borne by forced endurance. People still need help. The demand far exceeds the supply, a yawning gap that threatens to pull many people within.

We often talk about people in the aggregate, helping X number of patients with these diseases or securing disability assistance for Y number of people. But in these considerations, each unit of measurement, is an actual person.

Each individual we serve is dealing with the competing priorities of normal life—helping their kids adjust to a new school, guiding their own parents through the challenges of aging, or living on a fixed income themselves—addressing these daily economic anxieties are usually trying enough for even the strongest and healthiest among us. Sometimes there is the spirit-crushing reality that you’re unable to pay each bill that comes over the transom. To then shoulder the extra weight (a slab of concrete?) of health challenges with their associated jaw-dropping price tags might feel like more than a person or family can handle.

As one client recently told us:

I didn’t realize before I was diagnosed that someone in this country, in this day and age, could be put in this situation. I had no clue that just an average person with an average income living an average life could suddenly have everything turned around on them to where they’re facing such an enormous uphill battle, both health wise and financially. It’s shocking. It’s really shocking.

I come to work every day because I am 100 percent positive that until we find a system-wide solution to this problem, we are capable of supporting those that are suffering on an individual basis. At CVC, our mission is to find answers for each individual who has or could have relied on us for support. After all, in America, we have an ethos, a sense of community, of public good, to find solutions and to give a hand up to others.

Martin Luther King Jr. said: “Life’s most persistent and urgent question is, ‘What are you doing for others?’” To see how I should answer that question I get up each morning, fill my “Keep Calm and Call Jack Bauer” coffee mug and tackle these issues with the certainty that we will find the answers, soon, getting people the help they need.

—Greg Smiley, President and CEO, Caring Voice Coalition

The post Starting each day with gratitude and hope appeared first on Caring Voice Coalition.

Paying for medications:

If CVC assisted you in the past, our resources page is a good place to start. It allows you to search for organizations by diagnosis. But we also want to make sure people are aware of the other, more general resources, and can understand how to use them. Read on to learn about those.

At the bottom of the resources page, you’ll find a list of organizations that might help regardless of diagnosis. A few to highlight that can help point you to prescription coverage are:

• GoodRx — GoodRx is a search engine for drug costs to help you shop around, find coupons as well as find certain prescription assistance. Once you type in your medication, be sure to also filter by your insurance type and look for patient assistance programs.
• Partnership for Prescription Assistance — This free service connects you with prescription assistance programs you may be eligible for after you fill out some basic information about yourself. It guides you through the application. (The site also offers a free or low-cost clinic search engine.)
• Rx Outreach — This is a nonprofit pharmacy that ships certain medications at a lower cost to qualifying individuals based on income.
• RxAssist — This is simply a directory of patient assistance programs. You can search by the name of your drug.
• Coverage for All — The Foundation for Health Coverage Education runs this site meant to simplify the process of choosing affordable health coverage. After you answer a quick set of questions about your employment, income, health status, etc., the site provides a list of insurance options you may be eligible for.

Immediate or emergency help:

Maybe none of these options are working and you’re desperate for help right now. National organizations you can try are:

• 211.org – Run by United Way, 2-1-1 is a hotline that can confidentially connect you to the best local or national resources for a wide variety of immediate needs you may have.
• Modest Needs – Modest Needs provides small, no-strings-attached, financial grants for short-term immediate crisis situations for working families. (Read eligibility guidelines.)
• Need Help Paying Bills – This website organizes resources based on need, location and eligibility to help you find help paying bills.
• Aunt Bertha – This is an extensive, easy-to-use database of resources. Search results are based on your zip code and then categorized by need (food, housing, goods, transit, health, money, care, education, work, legal, etc.).
• Global Genes – Global Genes collects resources that might be useful if your have a rare disease, including some patient grants. The organization also provides a great deal of patient education.

If sorting through this information overwhelms you, then start by calling whichever one seems relevant to you. People at these organizations should be able to knowledgeably guide you to what they can help with.

Government assistance:

If you are interested in government assistance, visit benefits.gov where you can browse program explainers organized by benefit category, state or agency. You can also fill out this form to view a list of results filtered for you.

BenefitsCheckUp is also a useful resource. The site (from National Council on Aging) helps you navigate mostly federal government programs based on personal information you input. It organizes information and searching by assistance category, including: medications, health care, income, food, utilities and housing.

For rare disease government resources, try National Institutes of Health or National Organization for Rare Disorders’ clinical and research trial finder.

Need guidance? Try a social worker:

Maybe it would be helpful to have someone help guide you through the resources you could use. Consider contacting a social worker. Social workers help individuals and families cope with problems they face by providing or connecting them with resources and services. They can help you make a plan for easing the challenge(s) you have, and can also connect you with government or community resources.

You can search for one by need in your area on HelpPro. The site allows you to search by insurance coverage. You might also ask your medical or insurance provider directly whether they have social work services they can recommend.

CancerCare can also connect you with oncology social workers. Additionally, it offers extensive resources for navigating financial complications of illness here.

Keep checking caringvoicecoalition.org/blog for more posts about financial resources over the next few weeks.

The post Ways to find financial assistance appeared first on Caring Voice Coalition.

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.

Examples include: The Assistance Fund, HealthWell Foundation, Patient Advocate Foundation.

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

Examples include: Aunt Bertha, Coverage for All, Global Genes.

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. Check back with us for more info on two government programs—low-income subsidies and state-run pharmaceutical assistance programs (SPAPs) in an upcoming blog.

The post Where to turn without CVC financial grants appeared first on Caring Voice Coalition.

We are grateful to have been able to assist thousands of patients suffering with numerous chronic illnesses and remain committed to fulfilling our charitable mission of improving the lives of patients with chronic illnesses.

While we are developing new ways to continue our charitable mission, I must urge you to seek out alternate resources from other patient assistance programs and take assistance where and when you can. Links to some of these resources can be found on our helpful resources page.

In health,

Greg Smiley
President, CEO

The post A decision on 2018 financial assistance appeared first on Caring Voice Coalition.

It is difficult to call in every day to see if the fund you rely on is accepting applications for 2018 assistance. It is even more difficult knowing that the year is ending and assistance with next year’s health care needs is uncertain.

We are currently working through how to handle assistance requests in light of the decision by the U.S. Department of Health and Human Services Office of Inspector General to rescind our Advisory Opinion. The Advisory Opinion process is complex, but in the most general terms, an Advisory Opinion provides certain charities, like CVC, with some reassurances related to the operation of their financial assistance program. It is, therefore, imperative that we move forward with utmost care.

Accordingly, we continue to concentrate on ensuring that each of our practices at CVC follow both the letter and spirit of all applicable laws and regulations. People living with chronic illnesses are our top priority and we have always made decisions with their best interests in mind. Since I came on as President and CEO six months ago, doing so through fully compliant services has been our singular focus. Doing things correctly is always more important than doing things quickly.

This is difficult to say, but yes, we are very concerned that we may not be able to remain as a long-term viable resource for individuals with chronic illness. The CVC Board of Directors is continuing to evaluate all options available to our organization. But in the immediate term, our focus is squarely on how to first help patients.

The last thing we want to do is increase your anxiety or introduce confusion into your health care in any way. With that said: The organization will announce its decision about the future, and whether, or to what degree, we will be able to offer assistance in 2018, at some point in January. 

In the meantime, I urge you to seek out alternate resources from other patient assistance programs and take assistance where and when you can.  The website goodrx.com may be of interest to you, as it serves as a frequently updated resource related to drug prices and available discount or assistance programs.

I will share more news very soon.

The post A message from the president of CVC appeared first on Caring Voice Coalition.

Lives changed by CVC

CVC has served more than 100,000 people, providing health insurance and disability education and person-to-person counseling for insured or underinsured patients.

People depend on CVC.

Michelle spent her entire savings and sold her home because of the cost of her medication. She found CVC before giving up hope. Find Michelle’s whole story.

Larry and Mary Jo Harris called CVC when they needed a little help putting the complicated pieces of proving disability together. Hear Larry tell their story.

Here’s how you can help people like Michelle, Larry and Mary Jo.

1. Donate today. It doesn’t take much to change somebody’s life.
2. Spread the word about CVC on Facebook and Twitter. Comment, like and share our #GivingTuesday posts.
3. Start your own fundraiser for Caring Voice Coalition on Facebook. See step-by-step instructions here.
4. Use that selfie for good. Join #GivingTuesday’s #UNselfie campaign that invites you to share selfies that name your cause. Follow their instructions:
   • Take a selfie with a caption or download and print this sign explaining why you support Caring Voice Coalition.
   • Post it to your favorite social media feeds with the hashtags #UNselfie #GivingTuesday and tag CVC.

Giving Tuesday is Nov. 28, the Tuesday after Thanksgiving, Black Friday and Cyber Monday. It’s a global giving movement meant to inspire and connect communities around the values of giving back.

Take part in Giving Tuesday by donating today. It doesn’t take much to change somebody’s life.

donate

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Many shared their gratitude for CVC. Some were thankful to be surrounded by passionate, caring people. Others said how much they appreciate doing something meaningful every day. But a common thread in each expression of thanks was the significant impact of the community we meet each day on the phone.

Talking to people who remain positive, kind or hopeful in the face of hardship shows us what resilience looks like. Talking to people with the courage to share their fear and vulnerabilities shows us what it means to be human.

As CVC Case Manager Nellie Capehart wrote for Community magazine this year:

This truly has been a rewarding career, knowing that in a small way I’m able to serve communities in need. The passion that some of our patients have shared with me has been inspiring. Hearing their stories of struggle and victory allows me to see that courage comes in all different shapes and sizes.

I am so grateful for the opportunity to direct such a wonderful team that serves this resilient community. I’m glad to ease some of the hardship and fear people face as they navigate life-threatening illness. But I know there’s so much more that still needs to be done.

With more support, we can help more people. People are depending on Caring Voice Coalition. It doesn’t take much to change someone’s life.

You can help by donating today.

You can also take part in our #GivingTuesday campaign. Giving Tuesday is a global day of giving that falls on Nov. 28, after Black Friday and Cyber Monday, and uses the power of social media to spread awareness and inspire action that contributes to positive change.

Keep an eye on our Facebook and Twitter feeds and share the special stories we’ll be posting. These stories are a way for us to connect you with some of the wonderful people that touch our lives each day.

The holiday season offers many chances to commune with family and friends, but it has its stresses and pressures too. The close to a year brings open enrollment and with it hard decisions about ensuring adequate and affordable coverage. The uncertainty of whether you can even get assistance from us or other charities at all leads to monstrous anxiety, and it’s terribly hard to prepare under so many things unknown.

We hear it; we feel it. We are doing as much as we can to help as many as we can. Thank you for your grace in these moments.

From the bottom of my heart, I wish each of you—our supporters, community members, friends new and old—warm and wonderful Thanksgiving holidays.

—Greg Smiley, President and CEO, Caring Voice Coalition

The post Happy Thanksgiving—join us Tuesday appeared first on Caring Voice Coalition.

I love helping people. So I feel very connected to the purpose of Caring Voice Coalition (CVC). It is an awesome feeling to, every day, be able to say, “We’re here to help.”

Before coming to CVC, I worked in the medical field. A former manager referred me to CVC in 2006, and I joined the team of case managers, made up of only four people at that time. I also worked in the accounting department, and now I’m part of the communications department.

As the communications specialist II, I help make sure patients receive letters in a timely manner, so they can stay up to date with CVC. I provide support group information for those looking to connect. I also answer the phone at the front desk and help direct callers to the correct department.

The first time a person calls CVC you can often hear fear or anxiety in their voice. My goal is to use those first few moments they interact with us to smile and let them know we can help them. After that, I can tell the difference in the caller’s tone of voice. I can hear the relief in their voice, which I hope helps their transfer to a case manager go more smoothly.

I really believe a good tone of voice can help somebody’s lousy day. You can tell a big difference if you have a good attitude when you’re on the phone. Patients are very sweet to me on the phone.

I love my job. I love that we help people live longer lives, giving them more time to be with their families. To me, that’s awesome.

I always do my best to put myself in the place of the patients I’m interacting with. I think of my own family. My sister-in-law had lupus and passed away in 2001. When my brother heard about CVC’s work, he told me she had actually passed away from pulmonary hypertension, associated with lupus. He started crying. He said if he had known that there was a Caring Voice back then, he would have been able to spend more time with his wife in her final years. Instead, he worked three jobs so he could pay for her medications.

I lost an uncle to idiopathic pulmonary fibrosis in 2008 when there wasn’t enough awareness about the disease for those around him to recognize what his condition meant. So I appreciate that a lot of the work we do in communications is simply spreading awareness about diseases—connecting people to support groups and organizing information to be shared at conferences.

I think CVC was like a magnet in my life—I was drawn to it. It’s been a very positive part of my life. Patients inspire me to be as positive as possible so that I might help them feel hopeful. Life is too short not to be happy, to “sparkle”—that’s my word. It can be rough out there. I hope when I sparkle, it helps the people around me sparkle.

I love CVC’s core values: respect and fairness, passion, service, commitment, honesty and integrity, and servant leadership. I try to live them because they are so good, and important in each part of life, not just at CVC. I think internalizing and exhibiting those can help my children especially see the value in reflecting these things.

I see the leadership here as an amazing example of what it means to care, and each day I feel honored and grateful to work for CVC.

The post Close up: Sonia Hemphill appeared first on Caring Voice Coalition.

I have been fortunate to work for the joint United Nations program on HIV/AIDS (UNAIDS) for the past nine years. UNAIDS unites the efforts of 11 UN organizations and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the UN’s Sustainable Development Goals. I have been stationed in Washington, D.C., Johannesburg, South Africa, and now Geneva, Switzerland. I am incredibly lucky working for an organization I believe in, for a cause I believe in, and seeing firsthand the impact global efforts on HIV have had on communities around the world.

Coincidentally, my hometown is Chester, Va., about a 40-minute drive from Caring Voice Coalition (CVC)’s headquarters. My family is still there and I love being home when I can make it.

I admire CVC’s person-centered approach and wish the world saw more of it. CVC champions for those who are struggling or left behind. Each client has a complex series of needs, hopes, dreams and fears. CVC is there to help these individuals on a personal level, treating them not as the disease they live with or a set of statistics, but as people.

Through CVC, I had the sublime privilege of meeting Meghan Sullivan, a young woman who was living with Huntington’s disease, and passed away in 2014 at age 26. She had this irrepressible energy and the fullest smile, all while living with the cruelest disease. And in three hours sharing a dinner conversation with her, I saw more courage than a thousand war heroes. It was humbling to see the face of God in her. CVC has worked with thousands of people like Meghan and remembering that fact drives me to continue my support for CVC.

These challenges are incredibly complex and can feel crushing some or even all of the time. These are challenges you just cannot handle alone. CVC understands that we are all part of a larger community of people and we must work as a team.

Working with CVC, I’ve learned how access to health care continues to be a problem in the U.S., just as it is in many parts of the world. We continue to struggle with expanding and ensuring access to quality health services for all Americans, and we still very often fall short. I see the importance of persistence in trying to serve and help individuals gain access. There will always be those who are left out and left behind. Without CVC and similar services, we have to ask, “Where will people go?”

Stationed in South Africa, I endured a horrible high-speed cycling accident on a mountain road and sustained multiple severe traumas to my face. I spent three weeks in intensive care in Johannesburg and, to date, have had 10 surgeries to repair and restore different parts of my face, with a few procedures yet to come. I am fortunate to have survived and now to thrive three years later. While I don’t dare compare my experience to maintaining a lifelong struggle with a life-threatening disease, I do have a greater appreciation for those contending with health care systems, with the overwhelming upstream navigation of providers and the need to learn to advocate for yourself. Those experiences permeate every detail of your life—not just whether or not I will feel healthy and vital again, but: Am I making the right choices? How will I manage the impact on my work, friends, family, spirituality, confidence, wallet? Where will this end?

Each patient CVC serves represents a story of perseverance. We have an obligation to try and support one another. CVC is a help to so many—we must do what we can to maintain that help.

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