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New trials since October 2018

Phase I since 2017  | Phase III since 2008

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evidence-based support and information


Support  > Insurance

Last update: 02/15/2019

Tips on Receiving Insurance Coverage | What if I have no insurance?  |  
Contact the Commissioner of Insurance for Your State | Lost Your Job?
Social Security Disability Insurance
Qualifying for Social Security Disability Benefits with Lymphoma
Other types of financial help 


Medicare Resources | Coverage | Articles | Insurance Info | Patient Advocate Organizations   |
Bone Marrow Transplant | Managed Care Terminology | Health Care Reform Updates

Key Resources:

Key Terms (below)

Medicare Plan Finder for Health, Prescription Drug and Medigap plans
Medicare & You
State-by-state health insurance options
Co-pay resources
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)  

The Federal Marketplace (shop Oct 2013- effective Jan 2014)
Follow these steps to ensure you don't lose your health insurance and other important benefits, too.
Financial Assistance and Other Resources for People With Cancer
Federal Social Security Disability Insurance: 
Map to your State Commissioner of Insurance:
New: Choosing a Medigap Policy:
A Guide to Health Insurance for People with Medicare (PDF)

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:


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.


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)

"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

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

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

Support for Students with Cancer & Survivors in College
Health Care Reform Timeline: What's changing and when:
Social Security's Compassionate Allowances Program Means
So Much To People In Time Of Need

Tips to receive insurance coverage for treatments


Be well informed and familiar with your health insurance policy. 


Prior to treatment, verify that your doctors, the healthcare facility , and the type of treatment you are receiving are all covered in your plan.


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. 

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?


Contact The Patient Advocate Foundation 


Contact the pharmaceutical company for drug you received, and ask for information about reimbursement specialist hotlines . 


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.


Contact the State Commissioner of Insurance for Your State.  See next item.

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.


Map to your State Commissioner of Insurance:

What if you have insurance and lose your job?


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."



Follow these steps to ensure you don't lose your
health insurance and other important benefits, too.

What if you don't have insurance? State by state health insurance options for people with pre-existing conditions


First, do not panic. Help is available from many sources:


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.


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.


Contact Medicaid:

877-267-2323 Web: 
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.


NEW Financial Assistance and Other Resources for People With Cancer

View more than 100 organizations nationwide that provide emotional, practical, and financial support services for people with cancer and their families.


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


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. 

Other types of financial help


Support for Students with Cancer & Survivors in College 


Free transportation or discounts for travel associated 
with cancer treatments  PAL


Clinical Trials may provide treatment without cost, 
especially studies sponsored by the NIH  PAL


Help with payment for drugs  PAL


Financial Assistance and Other Resources for People With Cancer

View more than 100 organizations nationwide that provide emotional, practical, and financial support services for people with cancer and their families.


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


Disability claims require documentation based upon the medical records of the patient.

How We Decide If You Are Disabled? See  


There are often two disability programs -- state and federal. 

To apply for Federal, see:   


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.


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)


The SSA will consider side effects from cancer therapy.


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 

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.


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:


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)


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.

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 

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:





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Insurance Resources
| Medicare Resources | Articles | Insurance Info
Patient Advocacy Organizations
| Bone Marrow Transplant



Does Medicare cover  transplant for  lymphoma?  

This document might assist.  It looks like it is covered to us.

NC Division of Medical Assistance Medicaid and Health Choice
Hematopoietic Stem-Cell & Clinical Coverage Policy No: 11A-11
Bone Marrow Transplantation Revised Date: March 1, 2012 For Non-Hodgkin's Lymphoma 
New: Choosing a Medigap Policy:
A Guide to Health Insurance for People with Medicare (PDF)
State by state health insurance options for people with pre-existing conditions
Map to your State Commissioner of Insurance:
Health Insurance
About Denials and Appeals (insurance) |  PDF 
A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan, 2003 Update
Insurance with Pre-Existing Condition
Leukemia (CLL)  and Social Security Disability Claims  By: Pitt Dickey - Attorney 
Medicaid/Medicare Coverage Issues Manual  CMS
Use the Search button on the CMS site to locate specific topics.
State Insurance Department Web Sites 

Click the map or links below to go to that state insurance department's web site.
The Health Insurance Portability and Accountability Act (HIPAA)
High Risk Pools

(provided by the Leukemia and Lymphoma Society)



Social Security Administration

Application for help with Medicare prescription drug plan costs

Centers for Medicare and Medicaid Services (CMS)

General information about the Medicare prescription drug plan:
"Outreach Toolkit" for the Medicare prescription drug plan:
Help and information for those with limited income and resources:
Health literacy 
- a guide to the best language to use when communicating with beneficiaries:
CMS' extensive Q&A resource:
Fact sheet link page for many of the subjects above:
Vignettes to help explain how coverage works with/affects other types of health coverage
Site for beneficiaries to find a doctor, learn more about the Medicare Modernization Act, deal with billing issues and learn about Medicare Advantage and Drug Benefit plan options:
To join CMS as an official partner to educate beneficiaries, caregivers and others, write to:
Rating Insurance companies
Look up your insurance company's financial rating 

Patient Advocacy Organizations

Patient Advocate Foundation
700 Thimble Shoal Blvd,
Suite 200
Newport News, VA 23606

Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. 

Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

800-532-5274  |  
Cancer Care, Inc.
275 Seventh Avenue
New York, NY 10001
(800) 813-HOPE (4673)
Financial Help Resource: financial pdf 

Entitlements Resource: entitlements.pdf 

Sources of financial assistance: Financial_Sources.pdf 
National Patient Advocate Foundation

National Patient Advocate Foundation seeks to create avenues of access to insurance funding for evolving therapies, therapeutic devices and agents through legislative and policy reform.

National Headquarters:
725 15th St. NW,  Suite 503
Washington, DC 20005
Phone: 202-347-8009
Fax: 202-347-5579 |
District Office
700 Thimble Shoals Blvd.
Suite 201
Newport News, VA 23606
Phone: 757-873-0438
Fax: 757-873-1082
The Office of Patient 
Advocacy (OPA)
Staff provide advice, support and access to extensive resources and information. 
To speak directly with a patient advocate, call 888-999-6743. Their "resources page" is the same as the one on NMDP's site. 
Here's the OPA link:

Financial Assistance


Also see 
Drug Payment Support

Provides chemotherapy drugs to patients with financial need.
American Cancer Society  800-ACS-2345 or local chapter

Provides free wigs, head coverings, financial referrals and resources to patients in need. 
Financial Assistance and Other Resources for People With Cancer
Adria Patient Assistance Plan 
Adria Laboratories, 
P.O. Box 16529, Columbus, OH 43216-6529 
Bristol-Myers Indigent Patient Assistance Program, 
Bristol-Myers Onocology Division, 
2404 West Pennsylvania Street, Evansville, IN47721 812-429-5000

Provides chemotherapy (Cytoxan) free of charge to patients with financial need. Request must be made by the patient's physician.
American Association of Retired People (AARP)
Pharmacy Service. Catalog Dept., 
Box 19229, Alexandria, VA 22320. 

Members can use their nonprofit service to save on prescriptions delivered by mail. Good for tamoxifen (Novaldex). Write for free catalog.
Help with payment for drugs PAL

Bone Marrow Transplants

National BMT-Link
National Foundation For Transplants
1102 Brookfield - Suite 202
Memphis, TN 38119
Assists those who need to raise funds for marrow transplants Maintains accounts to which tax-deductible contributions can be made.
National Transplant Assistance Fund (NTAF)
P.O. Box 258
Bryn Mawr, PA 19010
email: 800-642-8399
Assists with fundraising for all types of organ transplants.
The Bone Marrow Foundation
981 First Avenue, Suite 129
New York, New York 10022

212-838-3029 |
Nielson Organ Transplant Foundation
(Florida residents)
580 W. 8th St.
Jacksonville, FL 32209

The Transplant Foundation
8002 Discovery Dr., Suite 310
Richmond, VA 23229
Provides financial assistance for anti-rejection medication for transplant patients.
My Friends Care BMT Fund
(Michigan residents)
148 South Main Street, Suite 101
Mt. Clemens, MI 48043


Disclaimer:  The information on is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns, you should always consult your doctor. 
Copyright © 2004,  All Rights Reserved.