Key Resources:
Key Terms (below)
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Medicare Plan Finder for Health, Prescription Drug and Medigap plans http://1.usa.gov/1Eo9LbH
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Medicare & You Medicare.gov http://1.usa.gov/1IPWPTV
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State-by-state health insurance options Healthcare.gov
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Exchange shopping for health insurance begins October 2013
This information is provided in the state of PA ... which should be about the same elsewhere.
The Marketplace
(overview of rules) http://bit.ly/15Pymtd
The Federal Marketplace (shop Oct 2013- effective Jan 2014) http://bit.ly/15PyGrK
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LOST YOUR JOB? AARP
Follow these steps to ensure you don't lose your health insurance and other important benefits, too.
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Financial Assistance and Other Resources for People With Cancer Cancer.gov
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Federal Social Security Disability Insurance: socialsecurity.gov
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Map to your State Commissioner of Insurance: naic.org
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New: Choosing a Medigap Policy:
A Guide to Health Insurance for People with Medicare (PDF)
medicare.gov
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Note: Consider, of course, but double-check information on health insurance reform that comes from groups that have political objectives. Do this as you would when seeking medical advice: check for the source of the information - it should cite a section of the law or regulation.
Key Terms:
source: healthcare.gov/glossary/
Copayment (co-pay)
A fixed amount (for example, $15) you pay for a covered health care service, usually when you get the service. The amount can vary by the type of covered health care service.
Deductible
The amount you owe for health care services your health insurance or plan covers before your health insurance or plan begins to pay. For example, if your deductible is $1,000, your plan won’t pay anything until you’ve met your $1,000 deductible for covered health care services subject to the deductible. The deductible may not apply to all services.
Out of Pocket Costs
Your expenses for medical care that aren't reimbursed by insurance. Out-of-pocket costs include deductibles, coinsurance, and copayments for covered services plus all costs for services that aren't covered.
Out of Pocket Limits
The most you pay during a policy period (usually a year) before your health insurance or plan begins to pay 100% of the allowed amount. This limit never includes your premium, balance-billed charges, or health care your health insurance or plan doesn’t cover. Some health insurance or plans don’t count your copayments, deductibles, coinsurance payments, out-of-network payments, or other expenses toward this limit. In Medicaid and CHIP, the limit includes premiums. The maximum out-of-pocket costs for any Marketplace plan for 2014 are $6,350 for an individual plan and $12,700 for a family plan.
Tips from Patients:
Re: Denied SS Disability:
"It took two years, but only with the help of a disability lawyer did we get disability. Once we signed on with one, it did not take much time at all." - RL (cyberfamily)
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"You know the big "C word" keeps you out of many things. It's not suppose to but it does -- they call it discrimination. So if you have already been diagnosed, your in for a real fight to obtain any insurance other than Social Security, Medicare A, and B" - Keith
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Success Story:
"I was told by the social worker at Stanford that small or mixed follicular NHL was a slam dunk for disability given I was undergoing a bone marrow transplant. I followed her advice and have been on Social Security benefits for over a year. However, my application was bounced back twice for more information. It includes a multitude of questions about previous employment and experience which looks like they're looking to see what else you could be doing if your disability precludes you from doing what you're currently doing.
For instance, I'm a landscaper, but have been in sales. I stated emphatically that designing and building landscapes is what I do, and the fact that I'd done other things without passion and sometimes not very well, was irrelevant. Process took three months but benefits were retroactive. I believe you have to have not worked for 6 months before you're eligible, and that's the point the benefits begin accruing.
Reading the accounts on the Lymphomation site made me think you might get discouraged and not try, so I wanted you to know it's possible. The money's not huge, $1,700/mo, but my two sons both get $400 each too, so it's covering the mortgage and their future college or whatever. Definitely worth the fight, in my mind."
- Mark (CA) NHL-follic
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 To treat cancer effectively you need an accurate diagnosis, access to experts, and state of the art medicines, which are costly and not always readily available to all who need them.
If your insurer denies payment for your treatment, don't give up. Most people do get payment eventually.
"If you have purchased your own insurance in the individual market, you are protected by state law. For example, many states have a patients' bill of rights. For details on your protections for obtaining and retaining health coverage, check out information for Your State.
In the News and New Items
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Support for Students with Cancer & Survivors in College http://bit.ly/2s4fQ1w
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Health Care Reform Timeline: What's changing and when: http://www.healthcare.gov/law/timeline/index.html
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Social Security's Compassionate Allowances Program Means
So Much To People In Time Of Need http://bit.ly/oW0YMo
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Tips to receive insurance coverage for treatments
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Be well informed and familiar with your health insurance policy.
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Prior to treatment, verify that your doctors, the healthcare facility , and the type of treatment you are receiving are all covered in your plan.
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Ask your medical team for a referral to a therapist or social worker who specializes in helping cancer patients with their finances. These specialists are a wonderful resource and will be able to help you cut through the red tape.
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What to Do If Your Claim Is Not Paid?
Insurance companies may deny claims because they know there's a good chance the consumer won't appeal the decision.
FIRST, inform your health care team if you have been denied payment.
ASK your doctors for Help and to tweak and resubmit the claim: They can consult with your insurer and help answer questions about the treatment.
BE PERSISTENT: Do not take a denial as final, many times they are not.
GET LEGAL HELP, if necessary ... initiating this action alone can change the decision.
OFF-LABEL USE? Ask your health care team or hospital staff to provide insurance companies with studies showing that a particular drug is effective for your type of cancer.
These actions are often sufficient.
What Else?
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Contact The Patient Advocate Foundation patientadvocate.org
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Contact the pharmaceutical company for drug you received, and ask for information about reimbursement specialist hotlines .
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As noted, if necessary, sue the insurance company to get payment
for your treatment. Courts often side with patients and order insurance companies to pay for treatment.
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Contact the State Commissioner of Insurance for Your State. See next item.
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Contact the State Commissioner of Insurance for Your State
One of the roles of the State Commissioner is to "facilitate the fair and equitable treatment of insurance consumers"
You can write or call the commissioner to report policies that you feel are unfair.
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Map to your State Commissioner of Insurance: http://www.naic.org/state_web_map.htm
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What if you have insurance and lose your job?
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The Consolidated Omnibus Reconciliation Act (COBRA), was enacted to help.
"COBRA gives you the right to choose to temporarily keep the group health insurance benefits that you would otherwise lose after you reduce your working hours, quit your job, or lose your job. It also lets family members choose to keep health insurance after your job loss or other qualifying event that would normally cause them to lose the coverage they have through your employer."
See COBRA ACS
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AARP: LOST YOUR JOB? aarphealthcare.com/
Follow these steps to ensure you don't lose your
health insurance and other important benefits, too.
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What if you don't have insurance?
Healthcare.gov: State by state health insurance options for people with pre-existing conditions
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First, do not panic. Help is available from many sources:
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Contact your local health department
(in the government pages of the phone book or the Internet)
Ask what public health services are offered in your community.
Ask for information about any "charity care" or "indigent care" programs.
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Contact your hospital's social service office,
which may be able to direct you to other sources of help.
Hospital social workers will be knowledgeable about sources of support in your community.
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Contact Medicaid:
877-267-2323 Web: cms.hhs.gov
Medicaid makes health care services available for people with financial need. They may help pay for certain treatments.
Contact the social service office in your city or county to find out if you are eligible and if your treatment expense is a covered.
Begin early. The Medicaid approval process can take a long time.
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NEW Financial Assistance and Other Resources for People With Cancer cancer.gov
View more than 100 organizations nationwide that provide emotional, practical, and financial support services for people with cancer and their families.
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Review the free drug program:
If the drug or company that makes the drug you need is on the lists that follow, you probably can get assistance to pay for it with the information provided here by NeedyMeds: Drug Index | Drug Company Index
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Contact the National Cancer Institute
and inquire if you might be eligible for a clinical trials, preferably, perhaps, a study that is testing the standard of care against a promising new protocol.
NCI's hotline (1-800-4-CANCER).
* Contact the an NIH Cancer Research Center:
Also Contact the Patient Recruitment and Public Liaison Office at:
1-800-411-1222, TTY 1-866-411-1010
Every patients is on a research protocol.
Every citizen and permanent resident is eligible.
Patients from other countries are also welcome.
No one is ever denied.
Travel is paid when needed, as is lodging.
Includes a Children's Inn.
Specializing in rare diseases, and other serious conditions,
such as cancers.
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Other types of financial help
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Support for Students with Cancer & Survivors in College http://bit.ly/2s4fQ1w
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Free transportation or discounts for travel associated
with cancer treatments PAL
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Clinical Trials may provide treatment without cost,
especially studies sponsored by the NIH PAL
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Help with payment for drugs PAL
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Financial Assistance and Other Resources for People With Cancer cancer.gov
View more than 100 organizations nationwide that provide emotional, practical, and financial support services for people with cancer and their families.
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See also Financial resources below.
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Tips about gaining social security disability insurance
SSA stands for Social Security Administration
Note: State laws may vary
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Disability claims require documentation based upon the medical records of the patient.
How We Decide If You Are Disabled? See socialsecurity.gov/
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There are often two disability programs -- state and federal.
To apply for Federal, see: socialsecurity.gov
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In general, patients meet SSA standards for disability claims when it's determined that the malignancy is inoperable or beyond control of any other type of therapy.
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You can plan on at least three rejections, but you must go through the process for SS Disability. And plan on hiring an Attorney to represent you in front of the administrative law Judge which is the final process. The patient's doctor will be
instrumental in obtaining SSD. - Keith (patient)
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The SSA will consider side effects from cancer therapy.
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If cases go to court, the judge is the arbiter of what is a reasonable fee, and usually cut the fee back. Using an EXPERIENCED Social Security lawyer is a good idea.
For SS cases the fee is ordinarily limited to 25% of retroactive benefits. One would have to wage a four year successful case to get that kind of a fee, though with our SS system, it's not unheard of. - Toby
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Visitor Remarks and Tips
Disclaimer: We are not experts in disability insurance and therefore cannot vouch for the accuracy of the information or if it applies to current law.
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Keith (patient)
I have found that knowing how to reach the Commissioner of Insurance in my State to be an asset in my favor. - Keith (patient)
I can also tell you long term disability insurance is a
paper work nightmare and full time job for the patient, or
family member to keep up to date. So too are the redundant
mailings to maintain your disability once you get through the first year and have received a favorable decision from the administrative law judge. -
See for Map to your State Commissioner of Insurance: http://www.naic.org/state_web_map.htm
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Sue (Caregiver)
Read the list of impairments for social security disability. List every disability you have, and every impairment, not just NHL.
See 2001bluebook.pdf (PDF-Help) -
A disability application is no place for personal pride. State your disability strongly It is no place to be "optimistic" as to your current or future abilities. - Sue (caregiver)
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Jama: I can write you a long story about my personal experience in 1995 but do not know if they have loosened there qualifications..
I had to get a letter from doctors stating my terminal diagnosis.
Then had to supply clinical proof with copies of med reports.
Then had to wait 2 full years after qualifying before I could get Medicare & SS disability benefits based on my last quarters of employment salary....of course missing 24 months of quarters.
The benefits were low but the insurance vital as I was uninsured when extremely high priced Cobra expired.
When I did not die in the 2 year waiting period, and before the first check, I had to prove that I could not go back to work...again with letters from doctors & copies of updated medical reports.
I had been told upfront that I would not live to see benefits and do not go to the trouble of filing, but I had a minor child that was qualified along with me and had I died, she would automatically get benefits.
I would advise anyone who is seriously ill to file. It could be easier now, but regardless, the insurance is the most important part because Mr. Trump & Company may kill benefits and we return to the uninsurable.
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Qualifying for Social Security Disability Benefits with Lymphoma
Disclaimer: We are not experts in disability insurance and therefore cannot vouch for the accuracy of the information or if it applies to current law.
The following article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org/
If you or someone you love has been diagnosed with lymphoma, the last thing you should worry about is making ends meet. Fortunately, the Social Security Administration (SSA) offers financial resources to people who are unable to work due to a long-term illness or disability. Lymphoma often qualifies for disability benefits. You could be eligible for resources that could be spent on your medical treatments, rent or mortgage, food costs, or any other daily living needs.
Medically Qualifying for Benefits
The SSA reviews its own guideline for qualifications, known colloquially as the Blue Book, when determining if an applicant is eligible for Social Security benefits. Lymphoma is listed as a qualifying condition, but only in certain scenarios.
If you have Non-Hodgkin lymphoma, there will be two ways to qualify:
• You have aggressive lymphoma (such as diffuse large B-cell lymphoma) that’s persistent or recurrent despite a round of anticancer therapy. Three months’ chemotherapy will typically qualify—most forms of non-Hodgkin lymphoma will qualify here.
• You have indolent lymphoma requiring more than one anticancer treatment regimen within a one-year period. This will qualify for benefits from the date at which your first anticancer treatment regimen failed.
If you have Hodgkin lymphoma and your lymphoma hasn’t completely achieved remission, or the lymphoma returned within 12 months of completing anticancer therapy, you’ll qualify.
Finally, there are two more ways to qualify with either Hodgkin or Non-Hodgkin lymphoma:
• You’ve received a bone marrow transplant—this qualifies for a full year after the transplant. The SSA will review your claim after a year and determine if you’re still eligible for benefits
• You have mantle cell lymphoma
The entire Blue Book can be found online, so you can review the lymphoma listings with your oncologist to get a better idea as to whether you’ll qualify.
Compassionate Allowances
Some conditions are clearly disabling and warrant immediate approval. The SSA maintains a list of 200+ conditions that are typically approved quickly, known as Compassionate Allowances. The following forms of lymphoma qualify for a Compassionate Allowance:
• Adult Non-Hodgkin Lymphoma
• Any Childhood Lymphoma
• Mantle Cell Lymphoma
• Primary Central Cell Nervous System Lymphoma
• Primary Effusion Lymphoma
If you were diagnosed with any of the above forms of lymphoma, your claim should be approved in as little as 10 days. You’ll still need to wait five months to get your first payment, but you do not need to worry about your claim taking months or even years to be approved.
Starting Your Application
The easiest way to start your application is online on the SSA’s website. You can even save your progress to be completed at a later time if you’re unable to finish at once. If you’d prefer, you can also apply in person at your closest Social Security office. There are around 1,300 offices located at the country. To apply in person, simply call the SSA at 1-800-772-1213 toll free. Most claims will be approved within a couple of months, but those who qualify with a Compassionate Allowance should hear back from the SSSA within two weeks.
Resources Found Via:
1. https://www.ssa.gov
2. https://www.disability-benefits-help.org/glossary/social-security-blue-book
3. https://www.ssa.gov/disability/professionals/bluebook/
4. https://www.disability-benefits-help.org/faq/compassionate-allowance-program
5. https://secure.ssa.gov/iClaim/dib
6. https://secure.ssa.gov/ICON/main.jsp
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