|Kidney Cancer Support Groups|
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Help for Adults in the United States who have a physical or mental disability - Compiled by Angela
ON THE LATEST DANGEROUS DRUGS AND PRODUCTS TO KEEP YOU AND YOUR
FAMILY SAFE - Compiled by Laura
When I was diagnosed with kidney cancer, I was unemployed and uninsured. I applied for Medicaid. I was told I didn’t meet the basic eligibility requirements and should apply for Disability. The rationale given was that I could get Medicaid if my Disability application was approved – but if my Disability application were denied, I would have no grounds to receive Medicaid assistance.
I applied for Disability online – but my application was denied because I didn’t have a pathology report (which is obtained through either biopsy or surgery) and I was not considered inoperable. In an effort to help anyone applying for Medicaid or Disability – I have provided the following information.
Who Qualifies for Medicaid?
Please note that even if you meet the above criteria – there is still the financial aspect to consider. Should you fall into one of the above categories, you may be faced with what is called a ‘spend-down’ of your income. For more information:
Click Here for Important Medicaid Information - This link will take you to the Centers for Medicare & Medicaid Services landing page. You can use the links in the left sidebar to get information about eligibility, Income & Resource Guidelines, spend-down (Medically Needy) and so much more.
List of State Medicaid Program Websites (PDF) - Find out where to apply for Medicaid in your area by clicking on this link. The information will download as a PDF document to you computer.
The Social Security Administration uses a Blue Book to determine eligibility for Disability. The Blue Book contains the basic requirements for being considered disabled. You must meet these basic requirements in order to have your disability application approved.
The minimum requirements for Kidney Cancer:
13.21 Kidneys, adrenal glands, or ureters- carcinoma.
The Social Security
Administration also has a Compassionate Allowance for certain cancers
and diseases – this helps to expedite the application process
when certain criteria are met.
It is important to note that in the case of someone who is uninsured with cancer – a physician will not consider you inoperable based on your inability to pay for services.
Click Here for Complete Blue Book Information (Children & Adults) – This link will take you to the Social Security Administration Disability Evaluation landing page. In the left sidebar you can choose from categories such as Adults Listings, Childhood Listings, General Information, Evidentiary Requirements and an Overview of Listing of Impairments.
Click Here for Complete Compassionate Allowance Information (All Cancers & Diseases) - This link will take you to the Social Security Administration Compassionate Allowances landing page. In the right sidebar you can see updates and hearings about conditions recently added to the Compassionate Allowance database. At the bottom of the page are links to the Initial List of Conditions, New Conditions and information on how Compassionate Allowances are processed.
Click Here for Supplemental Security Income Information (SSI) - This link will take you to the Social Security Administration Supplemental Security Income landing page. Not to be confused with SSDI (Social Security Disability Insurance) – SSI is ‘supplemental’ income available to those who qualify.
Assistance for Cancer
This comprehensive list of financial assistance resources for those living with cancer has been three years in the making. Since my diagnosis in October 2007 – unemployed and uninsured – I’ve come across many financial resources for those with cancer. The following organizations offer a wide range of services from cancer treatment to everyday needs such as housing, food and transportation.
It’s been my experience that, aside from the government-sponsored programs, none of these offer any financial assistance with pre-surgical evaluation and the initial cancer diagnosing surgery – with regards to kidney cancer. Some types of cancer may qualify for pre-surgical/surgical medical assistance.
Please don’t hesitate to contact these organizations – even if you are in a similar situation as myself – uninsured, having no surgery, with a diagnosis based solely on CT Scans. Never assume that an organization can’t help – you won’t know until you ask.
Do you qualify for any Government-Sponsored Programs?
- is jointly funded by federal and state governments, so coverage varies
from state to state.
- is a federally funded program for citizens ages 65 or older or citizens
of any age with certain disabling conditions. Its services include coverage
for hospitalization, doctor visits and prescription drugs.
Veterans Administration - provides medical care to men and women who have served in the U.S. armed forces. They need not be combat veterans, and the treatment isn’t limited to illness or injury sustained during service.
What about cancer screening?
Because early detection is so important, many organizations
sponsor cancer screening, including free screening. And some of the
programs above will also cover screening of family members. In addition,
Breast and Cervical Cancer Early Detection Program provides medical
screening for breast and cervical cancers to women in underserved populations.
For those diagnosed through this program, a federal law has extended Medicaid coverage (in most states) to include treatment. To find out if you’re eligible — and to locate a program near you — visit the website.
And don’t forget to think locally: Many hospitals host health fairs with free public screenings. Call your local hospital, and ask for the marketing or public relations department to find out if they’re planning such an event.
The American Cancer Society website is a wonderful resource for anyone dealing with cancer. In addition to the following financial assistance links, they also offer the Cancer Survivors Network for anyone affected by cancer.
(800) 813-HOPE (4673) or email@example.com
CancerCare also offers an online Reading Room where you can browse resources by category or cancer type. You can also order free print publications through them.
(866) 696-3149 or firstname.lastname@example.org
Cancer Patient Care was created more than 50 years ago to assist cancer patients and their families with the everyday challenges that come with a diagnosis of cancer.
Cancer Patient Care services clients in select counties
of Eastern Washington and Northern Idaho.
It is important to note that the financial assistance CTCA offers is for CTCA patients who experience financial difficulties while undergoing treatment. They also offer some assistance for CTCA patients struggling to pay for non-medical needs such as utilities, rent, transportation and living expenses.
The LiveStrong Foundation has some very good resources, including the LiveStrong Guidebook - a companion for cancer survivors as they navigate the health care system. This two-volume set contains helpful information and journal spaces that help survivors address the physical, emotional and practical concerns they may have during the cancer journey.
At first glance, this appears to be quite a comprehensive listing – but the category of Financial and Government Assistance Programs is a bit misleading. The only two listings offering any type of financial assistance are Patient Advocate Foundation via LiveStrong SurvivorCare and Sharing Hope.
The partnership with Patient Advocate Foundation is pretty straightforward in that they offer assistance and information related to your employment, finances, insurance and medication co-pays.
The Sharing Hope resource is strictly about discounted fertility preservation options.
One of the other features of this listing are the Cancer
Support Communities listed by State; 6-week Cancer Transition Programs
for post-treatment survivors.
I am a bit hesitant about listing this as a cancer resource.
I have received care from one of these clinics – and though the
Free Clinic name is not misleading – you will be hard-pressed
to receive standard cancer care at these clinics. These clinics are
staffed generally by General Practitioners (GP’s) and Nurse Practitioners
(NP’s) and are designed to give low-income patients basic medical
NCI’s Financial Assistance Resource listing covers
the categories of cancer treatment, children/young adults, financial
counseling, general medical care, health insurance/co-payments, illness/disability
compensation, lodging during treatment, medication, scholarships, screening
and practical needs such as mortgage, rent, food and transportation.
(800) 296-1217 or email@example.com
The purpose of the National Patient Travel Center is
“…..to ensure that no financially-needy patient is denied
access to distant specialized medical evaluation, diagnosis or treatment
for lack of a means of long-distance medical air transportation.”
(800) 532-5274 or firstname.lastname@example.org
This group has been helping to solve insurance and healthcare access problems since 1996. Patient Advocate Foundation’s Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.
Don’t forget to check for nonprofit organizations in your area. Your hospital or treatment center may have a foundation that assists patients with medical bills and other expenses incurred during treatment. Your local health department may also have a list of nonprofit organizations near you that help people in your situation.
Many pharmaceutical companies sponsor programs to provide
prescription medications for patients who can’t afford them. NeedyMeds
provides information on such programs.
Cancer survivor Faith Coleman provides free healthcare
The new Access to Cancer Care for Low-Income and Uninsured Patients database is intended to reach low-income or uninsured Texans seeking free or low-cost cancer screening or treatment. Texas Cancer Information staff investigated procedures, contacts and clinic locations for screening and treatment for every Texas county. Information on how to obtain cancer care services in each of these counties is now available for download in PDF format in simple language and question and answer format.
Please see the General Guidelines for Low-Income or Uninsured Texans Seeking Cancer Care for general information about cancer resources in Texas.
Cancer Support Groups
Providing a comprehensive listing of regional and online
kidney cancer support groups. Don’t see your support group listed?
to have your support group added today.
Regional Support Groups (In Your Area)
The following is a list of Kidney Cancer Support Groups
that meet throughout the United States. This list will be updated as
group and meeting information is submitted. Check back often for updates.
New York/New Jersey/Connecticut Support Group
Online Support Groups (On the Web)
Association of Cancer Online Resources :- Home page
ACOR is a unique collection of online communities designed to provide timely and accurate information in a supportive environment. Find credible websites and cancer-related resources created by patients, caregivers, advocates and professionals. ACOR offers access to 159 mailing lists that provide support, information, and community to everyone affected by cancer and related disorders – use the mailing lists to connect with people like you online and share support and information.
Kidney Cancer Canada :- Home page
Kidney Cancer Canada is a charitable patient-led support organization established to improve the quality of life for patients and their families living with kidney cancer. Kidney Cancer Canada advocates for access to new treatments, provides support and information to patients, funds much-needed research, and works to increase awareness of kidney cancer as a significant health issue.
Kidney Cancer Konnection :- Home Page
The Kidney Cancer Chat Support Group is held at Kidney Cancer Konnection – a patient and caregiver initiative offering education and support to the global kidney cancer community. The website was founded in March 2010 by Jeff & Chrissy Newman, Kristy Richardson and Karen Louchart. Kidney Cancer Chat has been serving the kidney cancer community from various platforms since 1998. Kidney Cancer Konnection is now the permament home for this live chat.
The chat room is available 24/7 for use by anyone affected by kidney cancer. They do have scheduled chat sessions where you can feel secure in knowing someone will be there when you need them. Currently scheduled chats are Mondays 10AM ET (7AM PT), Tuesdays & Thursdays 8PM ET (5PM PT) and Wednesdays 8PM ET (5PM PT) for Consoling the Soul Grief Support which is open to anyone who has lost a loved one to cancer.
Kidney Cancer Konnection encourages everyone to take advantage of their unique support environment by utilizing the chat room even when there are no chats scheduled. Perhaps you have met others affected by cancer through social networking such as Facebook or MySpace. The Kidney Cancer Chat room gives you a safe location to meet, chat, and to give and receive support during times that are more convenient for you.
All chat sessions at Kidney Cancer Chat are unmoderated and unscripted – giving each participant the opportunity to share what is on their mind and to offer support to others. Because they respect your privacy, they do not Track IP Addresses or maintain transcripts of chat sessions – and registration is never a requirement when seeking support with them.
Chatting is as easy as 1-2-3. Just follow the link to the website, click on Chat, type in your name/nickname and click Login. It’s that easy. No password or registration is necessary.
Kidney Cancer Konnection. The support you need with
a family you can trust. You can learn more about Kidney Cancer Konnection
and Kidney Cancer Chat by visiting their website and Facebook
Kidney Cancer UK :- Home page
Kidney Cancer UK was founded in January 2000 by Keith Taylor and Dick Williams, two kidney cancer patients. It aims to provide UK kidney cancer patients and their carers with improved access to reliable information about kidney cancer and its treatment, and to establish a network of individuals and groups capable of offering mutual support.
KCUK is registered as a private limited company (Kidney Cancer UK Limited, company number 3918876) and is a registered charity (number 1089119). It holds an annual conference, organises educational events, publishes a quarterly magazine and occasional information leaflets, provides an Internet discussion forum, and regularly updates its website with essential information of interest to kidney cancer patients and carers, medical professionals and scientific researchers.
Miscellaneous Online Support Discussion Groups
Assistance for Living Expenses
Whether you have found yourself
unemployed, are part of a class called ‘the working poor’
or are struggling to make ends meet because of cancer – the following
offers some tips for saving money on the necessities and where you can
get help. Since I reside in Ohio – much of my information comes
from my own personal experience and the organizations I am most familiar
with. The best way to find assistance available in your area is to contact
your local United
If you have recently lost your job – you should immediately file for Unemployment Compensation. Just follow the link and click on the State you reside in. Not everyone is eligible to receive unemployment benefits – it will depend on your length of employment, job history and type of work (contractors and agricultural labor are not covered). You may be able to apply for benefits and file weekly claims online. If you have any questions regarding unemployment compensation – feel free to email me.
If you have cancer and are needing
help – please visit my Financial Assistance for
Cancer page in addition to the information below. There is a wealth
of resources at your fingertips. You can also email me if you need help
with applications, document gathering, etc.
The first step is prioritizing. It hurts – but is necessary. Your credit report may take a beating depending on the severity of your financial situation. Sorry – but you can’t worry about your credit score when you are struggling to pay the rent and utilities, buy food and keep gas in the car.
In general, you either have a
mortgage or you pay rent. This is your number one expense. You have
to have a roof over your head – there’s no way around it
unless you are out on the street. There’s also your utilities
– electric, gas and water. These are your second priority. Your
third priority is your transportation – and this often means a
car payment and auto insurance. Then you have food, household items
(laundry soap, toilet paper, etc.) and gas for your vehicle.
I know – these aren’t
the only bills you have. Most of us have credit cards, cell phone contracts,
home phone service, internet and cable or satellite television services.
And let’s not forget about your health insurance.
Health insurance is extremely
important. If you have a way of obtaining it or keeping it after becoming
unemployed – do it. All it takes is one major health crisis to
leave a path of financial destruction – and in some cases, obtaining
adequate medical care can be challenging when you are uninsured. I’m
a realist – I know how much those benefits cost and understand
that keeping health coverage could mean choosing between it and paying
for rent and utilities. If you can’t keep it – or you don’t
have health insurance – then please see the Financial
Assistance for Cancer page.
Credit card debt? Forget it.
Its not on the priority list. Cell phone contracts? You might want to
rethink those. Perhaps make a choice between home phone service and
cellular service. When you’re broke – you don’t need
both bills hanging over your head. Get rid of one – but be careful
which you choose.
I can’t emphasize it enough
– your rent or mortgage are your first priority. One of the most
basic needs is shelter. Unfortunately, I know very little about mortage
assistance – I have only ever read about it and have never been
in a position to need it. This will take some research – but there
is a wealth of information out there on the subject.
Rent assistance is something
you can obtain through places like United Way and local churches. In
general, these places will usually offer one-time assistance with a
portion of your rent. My recommendation is that you talk with your landlord
if paying your rent, whole or in part, is going to be an issue. And
don’t wait until the last minute. Your landlord will appreciate
your honesty and giving them advanced notice of your situation.
Not all landlords will work with
you – but it never hurts to ask if they would consider a temporary
reduction in your monthly rent amount. If all else fails and you are
faced with losing your home/apartment – you should begin forming
your Plan B – who you can stay with or looking for assistance
in moving to a more cost-efficient location.
For us, we were blessed to have
moved in a rental house in the country before everything hit the fan.
Though we do have a little bit of a commute to reach the nearest town
– we have saved a ton of money in the long run. Living in the
country provided us with the opportunity to ditch the trash service
bill – we recycle, give food scraps to the critters and burn what
is left. We have well water and septic – so no water and sewer
bill. We also have plenty of room to grow our own food – saving
us money on the grocery bill.
Telephone service is going to
be one of your top priorities – and it doesn’t have to cost
you a fortune. If you’re unemployed, you will be looking for work
and potential employers have to be able to contact you. If you have
cancer – you never know when the next health crisis will strike
– don’t be caught off guard with no way of calling for help.
If you have landline service and a cellular contract – chances
are you’re going to have to make a choice between the two.
Often times cellular companies
will allow you to put a temporary hold on your account – this
can help save you from early termination fees and keep the door open
for you to re-establish service once you have obtained new employment.
Home phone service is nice –
but it doesn’t have to be expensive. You may want to consider
a couple things before eliminating your landline in favor of keeping
your cell phone. Your landline telephone gives you the option of switching
to dial-up internet service if having the internet is a priority to
you. Dial-up internet is more cost-effective compared to DSL and Cable
with plans generally in the $10 range. I personally recommend Copper.Net
- you’ll get great service, far less connection drops and a price
that will leave you smiling. Click
here to see if they offer service in your area.
Most landline telephone companies
offer something called LifeLine
Assistance. This is based on income and/or participation in certain
assistance programs. This will require you to downgrade your current
service to a basic, local package – but will save you a lot of
money. When we used this assistance, our phone bill was under $20 per
month. If you are worried about long distance – you can go to
your local dollar store or even Wal-mart and buy a pre-paid long distance
There are also government sponsored
programs such as SafeLink
Wireless that will provide you with a free cell phone and 68 free
minutes of cellular service each month. I have one of these and its
been great. My service is partnered with TracFone – so if I need
additional minutes above the 68 provided to me each month, I can purchase
a 60 minute TracFone card for $20 and upon activation SafeLink will
convert it over to 100 minutes.
It’s important to understand
that you can’t have both the LifeLine Assistance program on your
landline AND the SafeLink Wireless service. You will have to choose.
The upside with SafeLink is that you will have voicemail – the
downside is you only have 68 minutes per month that are free.
If you want my opinion –
keep the landline and give the cellular contract the ax. Or if you are
really feeling frugile – get rid of both, sign up for the SafeLink
Wireless assistance and use the computers/internet at your local library.
Assistance is available for utilities
such as electric and gas/propane/fuel oil heating. You can find out
the specifics of where you can get this help in your area by contacting
United Way. As an Ohio resident, I receive assistance through the Home
Energy Assistance Program (HEAP).
HEAP was able to place me on
the Percentage of Income Payment Plan (PIPP) – which translates
into our paying 5% of our gross monthly income on our electric bill
during the winter months (November through April) and paying all current
monthly charges from May through October.
Beginning November 1st, 2010
– the PIPP Plus program begins. PIPP Plus offers assistance all
year long – and you pay just 6% of your gross monthly income towards
your electric bill – with no accruing back balance – and
1/24th of your back balance will be forgiven for every month you make
your payment on time and in full. The only exception is for homes that
use electric for heating – then you pay 10% of your gross monthly
HEAP also helps out with two
emergency programs each year – Summer Cooling Assistance and Winter
Crisis Program. The summer cooling program is for those who have respiratory
issues and have a note from their doctor that air conditioning would
be beneficial to their health. My asthma qualifies me. You can get assistance
with a window air conditioner, fans or up to $175 towards your electric
bill. The winter crisis program offers assistance with heating such
as a payment toward your gas bill (which can also be placed on PIPP)
or delivery of fuel oil. Eligibility is income based.
Toiletries & Clothing
There is a lot of assistance
available for food, toiletries and clothing. Most of the time you can
find local assistance listed in your newspaper – many churches
participate in food/clothing giveaways. You can also apply for SNAP
(Supplemental Nutrition Assistance Program) – formerly known
as Food Stamps. Just follow the link and use the pre-screening
tool to help determine your eligibility.
You may want to rethink your approach to grocery shopping – at least in terms of where you shop. I recommend Family Dollar, Dollar General, Walmart and Aldi Foods. Family Dollar and Dollar General seem to have the best prices on non-food items – though Aldi’s carries these items at a substantially lower price. I reserve my Wal-mart shopping for anything I can’t find between Aldi’s and the dollar stores.
In closing, financial hardship is a humbling and frightening experience. You are not alone. There are many resources to assist you. If you find that you need help in locating resources – please contact me. I am here to help in any way that I can.
About the CLRC
How to Contact the CLRC
This Infomation was compiled by Angela
you know that there are over 50 million adults in the United States
who have a physical or mental disability? Many of these individuals
were born with a disability, others have cognitive or physical limitations
due to diseases like dementia or blindness, and nearly 4 million others
are veterans whose impairment is the direct result of a service-related
injury. I truly had no idea these numbers were so high!
Overview of the Fair Housing Act
you Angela for re-searching this Information, it should be of great
benifit for the disadvantaged.