Ed Izenstark shares how he stays positive with the help of daily support from the Huntington’s disease community, and his firm belief in a cure.
Ed Izenstark with his wife.
I first heard of Huntington’s disease (HD) on the medical drama House. My parents say they had no idea about it before I started having a lot of symptoms and we were trying to figure out what it was in 2015.
I’m adopted, so that involved getting family history from medical records from when I was born. But those were sealed by the court. There’s a group in my county in Illinois whose purpose is to advocate for adopted people that are trying to find their medical history. They were able to track down my biological father who filled out a medical interrogatory form.
The adoption group redacts everything super personal from the medical records and releases it all to you. And they act as an intermediary. The first spot we saw HD was scribbled at the bottom of the guardian ad litem’s notes. It just said, “Huntington’s chorea,” and it wasn’t even spelled right. Presumably his bloodline was riddled with HD destruction.
I went to my neurologist and explained that to her. She’d only heard of HD in medical school and bet me that I did not have it. “There’s no way,” she said. But we did the test.
About a week and a half later I had my first appointment with an HD clinic just to get evaluated and see what they thought. They actually called the testing company and commandeered my test results from the other doctor. They called literally the next day saying the doctor needed to see me as soon as possible and they couldn’t explain why over the phone.
We went down the next morning for that discussion—I had HD.
Learning about HD
The information I got through the adoption advocates—none of it made sense. Just writing “huntingtonz” with a “z” and then putting “chorea” after it, that’s very confusing. That’s weird. Working with them led to the Associated Press writing an article about adoption reform and a bill being introduced in Illinois to reform the information you have access to when you’re an adult. After the article came out, a social worker from Huntington’s Disease Society of America (HDSA) reached out.
She put me in touch with Huntington’s Study Group (HSG), who runs clinical trials. They paired me with a drug trial. And I’m also in a few investigational studies.
HD changed my life in a lot of ways. I spend a lot of time in the clinical trial that’s at a hospital in a different state. So I fly every month to another state to receive an intravenous medication. The hope is the medication will reduce the Huntingtin protein (responsible for the symptoms of HD), which is exciting.
I deal more with psychological symptoms now. I’ve learned a lot about how HD works. I tend to be a positive person and try to spend more of my time doing advocacy stuff for HD than sitting around and being upset about it.
Naturally my wife was super upset, she probably is still super upset and hasn’t quite dealt with it, and that’s OK. My parents have been supportive—coming to advocacy walks and doing things like that. I have a tendency to try to rally people through events or fundraisers that can be beneficial to HDSA or HSG—the organizations that I’ve come to work along with. Building a support system is never a bad thing. I definitely look to my wife and kids for support. My kids—ages 7, 6 and 2 and a half—they’re awesome. I get a lot of my positivity, encouragement and silliness in life from my children.
For HD-related stuff, I find a lot of encouragement and positivity with everything that’s going on in clinical research. Multiple companies are developing treatment and somebody’s is going to do something awesome. I’m happy about that. I’m excited. When I got diagnosed, my doctor told me he doesn’t want me to worry too much because he is 100 percent confident that he will see a cure for HD in his lifetime.
At the time, of course I didn’t believe him. But, seriously—there’s going to be a cure in my lifetime. I’m not even questioning it because look at everything that’s going on. There are maybe seven different promising options right now.
If they do prove efficacy for one or more of them, the potential ripple effects that could have for Parkinson’s, Alzheimer’s or other related diagnoses is awesome. It’s just crazy to actually think about what they’re doing. It’s insane.
(If you want more information about those trials, go to HDSA’s “HD Trial Finder.”)
None of this is going to be easy
HD has taught me that none of this is going to be easy and I need to be incredibly persistent when dealing with everything and anything.
I’ve learned that I’m going to be irritated at my kids more. And sometimes I’m not going to be the best dad that I want to be. That’s OK—I need to learn to be OK with that.
I’ve learned that I need to make sure that I always keep my support system around me and appreciate them for how amazing they are. I’m sure that dealing with me and my irritability or my sometimes craziness, or random muscle movements—whatever—is obnoxious and I’m sure they are not ecstatic about it, but they deal with it.
Ed’s support team, Team Izenstark, joined him for a walk to support the Huntington’s Disease Society of America.
I’ve learned that I’m going to go to doctors that are going to look at me like I am some sort of strange medical mystery. I had a doctor once walk up to me, give me a hug and want to shake my hand because they’d never met someone with HD. They were bewildered and wanted to do an impromptu exam to see what HD is. I let them know that’s not quite how this works. But most doctors are really cool and they’re intrigued by it. A few make it a little weird sometimes.
It would be awesome if more advocacy work were done to make sure doctors and nurses have a fundamental understanding of what HD is, and recognizing, treating, or dealing with HD patients to avoid uniformed or even painful interactions.
To the newly diagnosed, I would say: Don’t freak out. It’s going to be all right. Don’t go down the Google rabbit hole. Definitely join “Huntington’s Disease Support – The Good, The Bad, and The Ugly,” the largest Facebook support group. It’s 5,500 people that either have HD, or have or had spouses with HD, or are caregivers of people with HD. It’s just so much love and support. Once a week, everyone’s sending somebody’s relative birthday cards.
Reach out to an HDSA social worker because they’ll have local resources. Go to a nearby HD walk. In every community or HD Center of Excellence there’s going to be one or two people that are the HD magnet. They have access to all the information and have lots of resources and know people that can help you with whatever you need. Use HDSA’s search tool to find a social worker or find out who your HD buddy is going to be. Just reach out and ask for help.
And to medical providers, I would say: Check out Continuing Medical Education (CME) on HD. A lot of solid programs are available, but HSG just launched a pre-CME program for doctors and nurses to get free CME hours by taking super basic, fundamental courses on HD online.
My first couple years of diagnosis, my HDSA social worker checked in once a month. I kind of exploded to her one day about the trouble I was having applying for disability. And she sent me to Caring Voice Coalition (CVC). It was an awesome referral. And we’ve been in better shape ever since.
My Social Security case just went into “pending decision writing.” So we’ll see what they decide. The first time we applied for Social Security, the local office did not give a decision for the longest time because nobody there knew what HD was. They eventually told me that HD is not cancerous enough to qualify for SSA disability. Then later they denied it saying the genetic identifier of HD, my CAG repeat (learn more), was not positive for HD, which is not how that works at all.
Then CVC Patient Advocate Allison Bartlett got involved. I’ve put her through a lot of work. I had to send her a CD-ROM and three binders full of medical records when we first started. Even during my hearing, the judge made silly comments about the amount of records in the case. But Allison has been so awesome and patient with me—and my absolutely obnoxious phone calls every two weeks checking in to see if anything new happened.
I am extremely grateful to her for her patience and hopefully everything works out. We’re crossing our fingers and doing what everybody does—prayers, good thoughts, high fives, petting dachshund puppies or whatever—for good karma.
I recommend contacting CVC or another disability attorney as soon as you can in your disability process, rather than waiting until denial. If I had filed differently, it may have turned out better.
My hope is my HD stays very carefully, very methodically, almost pathologically managed. I want to stay right where I am forever, without deteriorating more—not my speech, swallowing, muscle movement—everything staying right here. I know that that may not be possible. But let’s just cross our fingers and hope that the experimental meds work, and that I’m not getting radiated for no reason.
For HD as a whole, I would love to see a cure. I would love to see more advocacy. I would love to see more of what we’re already doing. The entire HD community is already so loving and tight and friendly. Everyone’s a brother and a sister and let’s have just more of that, because we need that.
It’s an awesome thing that you can go to a walk and have like 9 million people around you and all of them will take care of you. We’re all one giant HD group of really crazy people and that’s scary but fun, all at the same time.
NeedyMeds is a nonprofit that offers help with the costs of medicine. We asked NeedyMeds Director of Education Carla Dellaporta a few questions to help explain their services.
What services does NeedyMeds provide?
NeedyMeds connects people nationwide through our website and toll-free helpline—free and anonymously—to programs that will help them afford their healthcare expenses.
Who are those services for?
Services are for anyone who resides within the United States.
How do I know what medications NeedyMeds helps with?
Director of Education Carla Dellaporta
Simply stated, NeedyMeds can help you find cost savings programs for all medications including prescription, over-the-counter, name brand and generic. You can type the name of the medication into “Drug Search” on the top left hand side of needymeds.org. Or you can reach out to the expert call center counselors at 800-503-6897.
What if I don’t find a cost savings program for my medication on your website? Is there any other service or project you offer that might help?
If a cost savings program is not available for your medication, you can try the NeedyMeds Drug Discount Card, which is free and anonymous. However, keep in mind the card is not valid if used with insurance. The card may be used in place of your insurance and especially if you fall under one of the following categories:
Your insurance has no drug coverage.
You have a high deductible.
You have a high copay and by using the drug discount card without insurance, the cost to you is lower than your copay.
Note: If you use the card in place of your insurance, those costs won’t go toward any deductible or out of pocket maximum
The card is best for minimizing the burden for those who take multiple common medications. It is unlikely to help with rare disease drug costs. For help with rare disease drug costs, try the manufacturer directly, or try searching NeedyMeds by diagnosis here or by medication here. We offer help with those prescription assistance applications.
How do I get a Drug Discount Card?
To get a Drug Discount Card, you can visit the NeedyMeds Drug Discount Card page and order one to be mailed to you; you can print out a discount card using this PDF; you can download Storylines, the NeedyMeds self-care app that comes preloaded with the card; or, you can request one over the phone with a call center counselor at 800-503-6897. If you would like to receive a bulk supply of Drug Discount Cards and educational brochures, you can send an email to firstname.lastname@example.org.
What one or two services do you want more people to know about?
HEALfundr: The NeedyMeds crowdfunding platform that makes it possible to fundraise for much needed medical expenses with 100 percent verified campaigns.
Camps and Scholarships Databases: NeedyMeds has databases dedicated to finding camps, retreats, recreational programs and educational scholarships for those living with a specific diagnosis.
I’ve heard prescription assistance websites sometimes scam people. How do I know this isn’t a scam?
We do not charge individuals for any information or help. You should almost always be able to find and apply to prescription assistance programs at no cost to you. Learn more about spotting a scam here.
How is NeedyMeds able to provide these discounts?
NeedyMeds is dedicated to joining the movement towards affordable health care for all. Providing access to educational tools and healthcare cost savings programs to people in need free of charge was the reason our president, Dr. Richard Sagall, founded NeedyMeds. Like other nonprofits, NeedyMeds relies on various sources of financial support to make our work possible including corporate and individual donations, grants, thoroughly reviewed website partners, as well as various software or transactional fees for services to companies we work with.
I’ve heard you also help with pets. Is this true?
As many of us know, taking care of the four-legged members of our families—such as dogs—can be quite the expense. It turns out that often dogs are prescribed the same medications that humans take. To save money, a pet parent can request the vet write a prescription, which can be filled—with the NeedyMeds Drug Discount Card—at a regular pharmacy. It’s an unexpected way to save money for countless families. Check out this video to learn more.
How can a person apply or find out more?
It’s extremely beneficial that there is no need to apply, sign up or register for NeedyMeds! All of our resources are free, anonymous and accessible to anyone living within the U.S. You can learn more by visiting www.needymeds.org or by calling our expert counselors at 800-503-6897 (9 a.m. to 5 p.m. ET).
Anything else you’d like to add?
Spreading the word about NeedyMeds is something that requires endless partnerships. Please join us in letting as many people know about NeedyMeds as possible. Awareness is sometimes all it takes to help someone in need get their much-needed healthcare expenses met.
Many Medicare beneficiaries qualify for important prescription drug savings but don’t know it. To find out if you might qualify, review the two government programs below that provide financial help related to medications: Low-Income Subsidy (also called Extra Help) and State Pharmaceutical Assistance Programs.
Low-Income Subsidy (LIS), also known as Extra Help, is a program available in all 50 states and Washington, D.C., that lowers monthly premiums, annual deductibles and prescription drug copayments incurred in every level of Medicare prescription drug coverage (Part D and Medicare Advantage with prescription coverage).
Includes unexpected income that Medicare will ignore (“income disregard”) of $240 annually.
2. Have assets at or below:
If single: $14,100.
If married: $28,150.
Includes a $1,500 per person burial allowance.
These limits are higher in Alaska and Hawaii. See the full list of 2018 eligibility requirements and benefits here.
If you are eligible for Medicaid or certain Medicare Savings Programs (QMB, SLMB, QI), you are considered automatically eligible for Extra Help and you do not have to apply. If you are not already eligible for one of these programs you must apply for Extra Help through one of the following methods.
By mail: Request a paper application by calling Social Security at 1-800-772-1213.
In-person: Schedule an appointment with your local Social Security office.
State Pharmaceutical Assistance Programs (SPAP)
State Pharmaceutical Assistance Programs are offered in many states to help residents pay for prescription drugs. Each SPAP is structured differently and some states even have multiple programs.
Benefits of SPAP vary by state and may include lower monthly premiums, annual deductibles and prescription drug copayments. Many states restrict their SPAP program to Medicare beneficiaries only, but not all.
When applying for SPAP you will need to contact your states’ program for application details.
To find out if SPAP is available in your state and if you qualify search here. Once you have located the SPAP in your state, visit their website for more details and updates on the program.
I try to meet each day with hopefulness and gratitude. Sometimes I must frontload the coffeepot the night before to encourage me to rise earlier than I might like. A simple comfort I indulge in is a pair of long thick red, white, and blue stars and stripes socks I store by the bed to cross the cold floor to the kitchen. I get up, put those socks on and see how I might give more to the world than I take from it.
CVC President and CEO Greg Smiley
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 assistance that would most benefit each person with chronic illness can be varying and complicated. We collected some financial assistance resources we have verified as possibly useful, then organized them according to need. We hope you’ll find something useful.
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.
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.
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.
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.
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.
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).
Managing a chronic illness requires spending a lot of time and energy on day-to-day issues. Leaving time to consider future needs is not easy. But without an advance care plan, we risk being caught unprepared during crises, adding anxiety and stress to an already difficult time.
Each of us can help avoid this by considering questions such as: What treatment do you want in a medical emergency? Who will make health and other decisions for you when you are not able? Who will you trust to make sure your needs are met?
Having a plan for the future will ensure decisions are made according to your desires.
Get started by completing some basic documents to take control of your future on your own, or in a short meeting with a lawyer. With the following completed advance directives—including a living will and power of attorney—you allow a designated individual to help handle your affairs if the time comes that you are unable to make decisions for yourself.
A last will and testament dictates your wishes if you pass away. This includes who is nominated as a legal guardian for minor children, who inherits specific items and what happens to property not specifically mentioned. You can appoint an executor to supervise the distribution of property and payment of all debts and taxes.
Living wills are different from a last will. They dictate your wishes for medical care in the event you are unable to communicate your wishes or have impaired decision-making ability. This document normally lays out details regarding the specifics of end-of-life care—whether you want to have a feeding tube, be put on a respirator, etc.
Power of attorney
A power of attorney gives someone you appoint the responsibility to step in if you aren’t present or able to make decisions for yourself. You can assign power of attorney for all aspects of your life, or only specific matters such as medical decisions. Most powers of attorney only give your appointed agent the ability to act on your behalf once you are incapacitated and unable to make your own decisions, but that can vary depending on how the paperwork is written.
When choosing an agent, make sure it is a person that you trust and will act with your best interests in mind.
Some things to consider when choosing an agent are:
Can you trust that person with important financial and legal affairs?
Is the person close enough to effectively handle your affairs? Will they want to serve as your power of attorney?
Does this person share or understand your values?
Is this person assertive enough to advocate for your best interests when facing opposition from family, friends and potentially you?
Appointing an agent is a big decision. You should feel secure that he or she will make decisions that honor your personal values, wants and needs.
Advance directives are documents that make sure your end-of-life wishes are known and followed if you are incapacitated and unable to make your needs known.
They can include:
Living wills: A document that dictates a person’s wishes for medical care they want to receive in the event they are not able to communicate their wishes or make decisions.
Medical (health care) power of attorney: A document that appoints a person to make health care decisions for you in case you are unable to speak for yourself.
Do not resuscitate (DNR): An order written by your physician that prevents your health care team from initiating CPR in the event of cardiac or respiratory arrest. This form is only valid if a doctor signs it.
How to obtain these documents
To complete these documents you must be 18 years of age or older and of sound mind.
You can complete power of attorney papers and wills on your own. However, you need to verify your state’s specific legal document requirements, such as how many witnesses must sign, or if it needs to be notarized.
Experts typically advise hiring a lawyer to assist with processing these documents to make sure your wishes are clearly laid out and the document is completed per the states guidelines.
Once you get these documents you will want to provide a copy to the appointed power of attorney agent(s), your medical providers and financial advisors when applicable.
Distributing copies of your completed document is vital to ensuring your wishes are known and followed by the individuals you have appointed.
What happens without these documents?
If no will is in place when someone dies, state laws dictate who inherits what. In the event you become incapacitated and unable to make decisions, health care professionals will consult your family members according to your state’s decision-making laws. These laws identify individuals who may make decisions on a patient’s behalf when no advance directives are in place.
Members of Caring Voice Coalition’s Health Insurance Counseling team wrote this post. Look for more regular posts from them here on the CVC blog. Let us know what topic you’d like to hear more about at email@example.com.
Not happy with your Medicare Advantage plan? You have until Feb. 14 to make an adjustment.
The 2018 Medicare open enrollment period ended on Dec. 7, meaning many Medicare recipients have picked the plan they will stay enrolled in for the remainder of the year.
However, if you are enrolled in a Medicare Advantage plan and feel your plan is not meeting your needs, you still have an opportunity during the Medicare Advantage Disenrollment Period (MADP), which began Jan. 1 and lasts until Feb. 14, to leave your Medicare Advantage plan and switch to Original Medicare (Medicare Part A and Part B).
What patients can do during MADP
You must notify Medicare or your Medicare Advantage plan directly during MADP if you no longer want to be enrolled in the plan. This will result in your current plan’s coverage terminating at the end of the month you drop the plan. At that point, you will only have Medicare Part A and Medicare Part B, but will have the opportunity to enroll in a Medicare Prescription Drug plan until Feb. 14. If you enroll in a new prescription drug plan during this time, your coverage will start the first day of the month following enrollment. It is important to note that disenrollment from the Medicare Advantage plan and enrollment into a prescription drug plan should happen in the same month so there is no lapse in coverage.
Example: If John decides to leave his Medicare Advantage plan during MADP and notifies Medicare he no longer wants to be enrolled into his current plan on Jan. 29, his current coverage will end Jan. 31. If he waits to enroll in a new prescription drug plan until Feb. 4, his prescription coverage will not start until March 1 because the plan always starts the first day of the month following enrollment. This means that for the full month of Feb. John will not have prescription coverage. On the other hand, if he enrolls into a prescription drug plan Jan. 30, his Medicare Advantage plan will end Jan. 31 and his prescription drug plan will start Feb. 1 with no lapse in coverage.
What patients cannot do during MADP
During MADP patients are not able to do the following:
Switch from Original Medicare to a Medicare Advantage plan.
Switch from one Medicare Advantage plan to another.
Switch from a Medicare Prescription Drug Plan to another or join.
Switch or drop a Medicare Medical Saving Account Plan.
Since I last wrote, the Caring Voice Coalition Board of Directors has evaluated all options available to our organization regarding financial 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. After considering all options and our current circumstances, I deeply regret to announce that CVC will not open financial assistance for any disease fund in 2018.
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.
Additionally, with the approach of winter comes the approach of its potential blues. These are good reasons to take a moment to check in with your mental health.
Nearly five percent of Americans encounter a recurring type of depression known as Seasonal Affective Disorder (SAD) during the fall and winter months. The decreased exposure to sunlight brought by those shortened daytime hours can trigger the depression, but other dynamics, such as the holiday season, can magnify it.
Some may feel a sense of isolation, or grow anxious from holiday preparations and expectations, while others might feel pressure to spend money they don’t have. For many, the perceived obligation to be joyful around the holidays generates unbearable anxiety and disappointment that eventually leads to a full-blown depressive state.
If any depression, anxiety or stress you are feeling is too much for you to navigate alone, ask for help. A good place to start is your regular doctor.
You might also check out these resources, useful for anyone experiencing anxiety, stress, depression or otherwise wanting to be in tune with their mental health.
Chronic disease and mental illness are very close relatives. Just as with any chronic illness, you should never ignore your mental health symptoms or attempt to manage them without guidance from a medical professional.
Unfortunately, a lot can get in the way of seeking help for SAD, or any mental health concern. One big reason people don’t seek help is because of a longstanding and continued stigma surrounding mental health issues.
This painful stigma can be just as harmful as the conditions themselves if left untreated. Discrimination makes it difficult to open up about mental wellness, especially by disclosing a mental health issue. You might hesitate to share your experience for many reasons. You don’t want to burden others. Maybe you’ve tried before but the result left you discouraged. Perhaps you think you can handle it on your own or you fear being judged or exposed. But masking your feelings can push you into a downward spiral even more grueling to overcome.
Friends and family often fail to understand their loved ones’ mental state, and instead they avoid the melancholic elephant in the room, and this is a choice that can leave you or your loved one feeling misunderstood and abandoned. If you trust your family, give them a chance to help. If they are misinformed about mental health, point them toward more useful information.
Let’s continue to drive out old notions until the majority of us approach mental health concerns with the same empathy and understanding as we might the common cold. Until then, it’s important to seek help when you need it.