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Insurance Matters

Every amyloidosis patient has a private insurance or public national health coverage story to tell. The stories vary widely; some patients never received benefits and may still be fighting for reimbursement. Some obtained coverage easily and without incidence. We that have been through the process and work with others about to travel this path are at a loss to explain it. There are no sure-fire answers or means to obtain coverage.

The problem is that the recommended treatment for Amyloidosis in many cases is a stem cell transplant with hi-dose chemotherapy. Some insurance companies think this is an experimental treatment and will deny coverage.


However, one common thread does exist. Many (not all) of the cases that were approved without much difficulty were for patients who took a very aggressive approach with the insurance provider. They, the individual diagnosed with amyloidosis, tended to work with the health care provider to obtain "pre-approval". This means that when the request was submitted to the insurance company they did not just sit back, hope and pray.

  • They made daily contact with the insurer regarding the status of the request.
  • They made sure that whoever was making this decision was provided with literature on amyloidosis and answers to any other questions they may have had.
  • They made sure the insurer knew that other major carriers have approved the treatment.
  • They made it clear to the insurance company that they were informed and not likely to take no for an answer.

This is the approach we suggest you take.


What should I do?

To help, here is a link to a list of prior insurance company approvals. We recommend that you download it and send it to your insurance company or ministry of health with a letter indicating that there does seem to be ample precedent in coverage

Also, included on this site is some medical literature authored by the leading experts in the field of amyloidosis treatment. You can find information under Physicians & Researchers/ Physician Guides and/or About Amyloidosis/Publications

Concerns about the insurance coverage can become quite important, especially for costs associated with more extensive possible treatments such as a stem cell transplant.

Patient Advocate Foundation

A non-profit organization which serves to create access to insurance funding for evolving therapies for cancer patients through legislative reform, legal intervention services, legal aid or referral as indicated by patient need.

780 Pilot House Drive, Suite 100-C
Newport News, VA 23606



Medicare will cover Autologous Stem Cell Transplants (AuSCT) with High Dose Chemotherapy for most patients of any age. Stem cell transplantation is a process in which stem cells are harvested from a patient’s bone marrow or peripheral blood, stored, and then transplanted back into the patient following high dose chemotherapy. This process is used to treat various malignancies and is one of the leading therapies for AL Amyloidosis. However, not everyone is eligible. Patients receiving SCTs for amyloidosis are a highly selective group by virtue of age, performance status, number of organs involved, and the severity of cardiac involvement.

The Centers for Medicare and Medicaid Services (CMS) in it’s March 15, 2005 decision, has determined that the evidence is adequate to conclude that when recognized clinical risk factors are employed to select patients for transplantation, high dose melphalan together with autologous stem cell transplantation (HDM/AuSCT) can provide a net health benefit for Medicare beneficiaries of any age group with primary AL amyloidosis. HDM/AuSCT is reasonable and necessary for patients of any age with primary AL amyloidosis who meet the following criteria:

  • amyloid deposition in 2 or fewer organs, and
  • cardiac left ventricular ejection fraction (EF) of greater than 45%.

You can read the complete text at http://www.cms.hhs.gov/mcd/viewdecisionmemo.asp?id=126. The “decision memo” as it is referred to from CMS is actually quite informative. Although somewhat technical, it does contain excellent background information on AL along with treatment information including drug dosages and response outcomes. If you can get through it, you’ll have an impressive working knowledge of the disease. Moreover, insurance companies tend to follow Medicare’s lead especially for an orphan disease like amyloidosis where no professional body had documented a universally accepted standard of care


How much does treatment cost?

The most important determinant of the cost of treatment is the treatment type. The most effective therapy that has been found to date, for those who qualify, is high-dose chemotherapy with stem cell rescue, also known as stem cell transplant (SCT), or autologous bone marrow transplant. (See the Treatment Options section of this site for more detailed information.) The SCT, while it is the most effective, is also the most expensive, by a multiple of about 10. Typically, neither cost nor insurance coverage is an issue with older forms of treatment that have been in use prior to commencement of the use of SCT. The rest of this discussion will focus on the cost issues that surround SCT treatment.

Venue for diagnosis

Diagnosis seems to be almost always a very difficult process for those afflicted with an orphan disease like amyloidosis. It is, however, fully reliable at centers of amyloidosis expertise. The authors of this site suggest that a diagnosis of amyloidosis should be confirmed at a center of expertise if possible, regardless of the treatment venue eventually chosen. An evaluation costs approximately $10,000 plus the cost of travel, which can be a significant burden. The evaluation takes about 3 days, but must be weighed against the benefits of knowing what you are up against.

Venue for treatment

If you are faced with paying the entire cost out of pocket, then outpatient treatment will likely be less expensive than inpatient treatment. In addition, all other things being equal, treatment at a public hospital will likely be less expensive than treatment at a private hospital. In general, we understand that the cost of uncomplicated SCT treatment at Boston or the Mayo Clinic is approximately $85,000 plus the cost of travel and expenses.

For those with insurance coverage, inpatient treatment will cost less out of pocket than outpatient treatment. Normally, amyloidosis is treated on an outpatient basis for a variety of reasons:

  • Hospitals are dirty places
  • There are healing benefits associated with not always being in hospital environment
  • It is less costly

Regardless of the inpatient or outpatient venue, travel and lodging expenses incidental to the treatment will significantly increase your out-of-pocket costs for you and/or your companion caregiver. Because your insurance carrier may not volunteer this information, it is important to ask if they provide benefits to defray the cost of travel and lodging. Having said all that, if you have supplemental insurance, out of pocket expenses are not an issue and completely reimbursed once the carrier has agreed on coverage.

Out-of-pocket expenses

Currently Boston University Medical Center and Mayo ClinicRochester treat most of their patients on an outpatient basis. The treatment takes 5 to 8 weeks. For budgeting purposes, excluding travel expenses, meals, lodging and miscellaneous items for 2 people can run as low as $50/day to as much as $200/day (see lodging costs below).


Air Travel Considerations

Commercial Airline Services

Regarding travel, the least expensive commercial air carriers in the United States are Southwest Airlines and AirTran. Depending on the city you are traveling from and the city where you are getting treatment or an evaluation, there may or may not be low cost air transportation. However, it is important to check if low cost air transportation is available to surrounding secondary cities. Ask your travel agent. Do not hold back. Explain your situation, as there are always alternatives.

For example, if you are traveling to Boston, you can check flights into Portland ME, Providence, RI, and Manchester, NH. These cities are all within a 1 ½ hour van drive of downtown Boston. Minneapolis is the closest major airport serving the Mayo Clinic in Rochester, MN. For Memorial Sloan-Kettering in New York, also check service through Islip (say “eye sl’p”), Long Island and White Plains in Westchester County, NY. Also, do not hesitate to ask for special treatment if you need it.

All the major Airlines have a “Compassionate Fare” travel plan for the diagnosis or treatment of life-threatening illness. The fare under this plan is half the full fare, with no restriction on days of travel, very liberal rules regarding length of stay, no fee to reschedule, fully refundable, seven days advance purchase required. This plan is available only by telephone, not on their Web site. If the agent you are speaking to does not understand the “Compassionate Fare” plan, insist on speaking with a supervisor. You will have to give the agent contact information for the hospital of your destination, so that they can verify the purpose of your travel.

Charitable Medical Air Transportation Services

If you have a family member needing long-distance travel for specialized medical evaluation, diagnosis or treatment, then you need to call the National Patient Travel Center, a 501(c)(3) charity specializing in helping patients find free or low-cost travel and hospital hospitality for family members in distant cities far from home. The National Patient Air Transportation Helpline is the only service of its kind in America. It can be reached 24/7 everyday of the year. It has been in operation for 15 years and helps thousands of patient families annually.

Call them on 800-296-1217 east coast time from 9am to 5pm. There is no charge for their referral services.


National Patient Travel Center
4620 Haygood Road, Suite 1
Virginia Beach, Virginia 23455



Your treating facility will be able to provide you with a listing of hotels and lodging options.


Social Security Benefits

The social security system offers two disability insurance programs, commonly referred to as SSI and SSDI. SSI (Supplemental Security Income) is designed for people with lifelong disability who have never had significant income and pays benefits based on financial need. It pays very little. You must be age 65 or older; Blind; or Disabled. Whether you can get SSI depends on your income, your spouses income and assets.

SSA disability, usually referred to as SSDI (Social Security Disability Insurance) is the one that is of interest to most amyloidosis patients. SSDI pays benefits to you and certain members of your family if you are "insured" meaning that you worked long enough and paid Social Security taxes. A number of amyloidosis patients are on, or have been on SSDI. In general, their applications were processed quickly, and were approved on the initial application. We recommend that you apply as soon as you are diagnosed whether you feel you’ll need this entitlement or not.

You can apply online at http://www.socialsecurity.gov/disabilityssi/apply.html.

The application form is quite extensive and asks lot about your disability, work that you used to do, your present condition and the treatment you have received. Alternatively, you can call them and they will do a phone interview with you to get things started.


Veterans Administration Benefits

U.S. military veterans without health insurance may be eligible for treatment without charge at a Veterans Administration hospital. We know of one case of an uninsured veteran who was advised by Boston Medical Center to seek treatment at the V.A. hospital in Nashville, TN. He was treated with a stem cell transplant across the street at Vanderbilt Medical Center at no charge, and is doing well at this writing. Also, we have an unconfirmed understanding that the VA will pay travel and subsistence for you and your caregiver.


Income Taxes Considerations

Tax-sheltered retirement accounts In case of emergency, money may be withdrawn from tax-sheltered retirement accounts without penalty. Life-threatening illness of the taxpayer or immediate family member is at the top of the list of qualifying emergencies. Income taxes will still have to be paid on the amount withdrawn, but the tax burden can be minimized by taking the withdrawal in a year when ones taxable income is low, or even zero, due to lost work time on account of illness.

Income Tax Deductions If unreimbursed medical expenses exceeds 7% of you adjusted gross income, it would be in your best interest to itemize deductions. You can include all medical bills, prescriptions, travel, lodging, and subsistence for you and your caregiver. In addition you can claim mileage and parking expenses to and from the doctors office. We recommend that you keep track of all of your unreimbursed expenses. For a 2 month stay in Boston, with insurance coverage, the out of pocket cost can be as much as $12,000. For most of us that would qualify for a substantial reduction in ones tax liability.


Medical and Pharmaceutical Reimbursement Assistance Programs

Quoting from their Web site, the Leukemia and Lymphoma Society provides supplementary financial assistance to patients in need. The program is supported entirely by public contributions. To apply for the program, simply contact your local Chapter or fill-out and return the convenient online application to your local chapter. For additional information and to download the application form, point your browser to their Web site and navigate to the Patient Aid page under Patient Services.

Patient Advocate Foundation is a national non-profit organization that looks to protect patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Patient Advocate Foundation - www.patientadvocate.org
Email: help@patientadvocate.org

700 Thimble Shoals Blvd
Suite 200
Newport News, VA 23606

Phone: (800) 532-5274
Fax: (757) 873-8999


Many pharmaceutical manufacturers have special programs to assist people who can't afford to buy the drugs they need. One problem is that it's often hard to learn about these programs. Each company has its own program with its special requirements, forms, and procedures. Some companies publicize their programs, others do everything they can to hide theirs. Typically, the patient must not be covered by any private insurance or public assistance covering pharmaceuticals, must not be Medicaid-enrolled, and must have family income that is equal to or below the federal poverty level. However, Policies vary from company to company. So check out the following web sites to see what the program is for the drug you need.

Cancer Supportive Care
Patient Support at www.celgenepsc.com (this program is operated by Celgene provider of drugs such as Thalidomide or Revlimid)

Millenium also has program in place to assist patients. www.millennium.com

Download "Top 17 Ways to Cut Your Prescription Drug Costs"

Advance Directives (getting your affairs in order)

At some point in a medical crisis, you, the patient, might lose the ability to express your wishes to your doctor. An advance directive is a statement or document in which you give instructions either to withhold treatment or to provide it, depending on your wishes and the specific circumstances.

An advance directive may be a living will, a document that details the conditions under which you would want to refuse treatment. You may state that you want your health care team to use all available means to sustain your life. Or you may direct that you be withdrawn from dialysis if you become permanently unresponsive or fall into a coma from which you won't awake. In addition to dialysis, other life-sustaining treatments that you may choose or refuse include:

  • cardiopulmonary resuscitation (CPR)
  • tube feedings
  • mechanical or artificial respiration
  • antibiotics
  • surgery
  • blood transfusions

Another form of advance directive is called a durable power of attorney for health care decisions or a health care proxy. In this type of advance directive, you assign a person to make health care decisions for you if you become unable to make them for yourself. Make sure the person you name understands your values and is willing to follow through on your instructions.

Each State has its own laws governing advance directives. You can obtain a form for an advance medical directive that's valid in your State from Caring Connections.

To Caregivers: It is difficult, to say the least that you have to deal with this right now. Keep in mind that you, as the caregiver, want what is best for your loved one. One of the hardest things to do, is separate yourself and your emotions out of the equation and think about what is just best for him or her and what he or she would want. There is hope that they will continue the fight and pull through this. The key now is to listen…..listen to the doctors, listen to his/her signals, and then listen to your heart.


For most adults in the United States, writing a will remains on the to-do list. A survey by lawyers.com, a free online legal resource, found that roughly 58 percent had not created a will. Some simply procrastinate, while others are reluctant to consider the possibility of death even in the face of a disease like amyloidosis. A basic will is a necessity for anyone who owns property.
Keep in mind that not having a will can be costly, time-consuming and stressful for loved ones who have the double burden of grieving and managing the estate administration process. there are plenty of choices, ranging from hiring a lawyer to drafting a will yourself.
Here are some options:

    Many lawyers handle basic wills, but estate attorneys can help customize a will for special circumstances such as blended families, estates worth more than $1 million and small-business owners who share the company with others. An estate attorney also can help clients set up a special trust for disabled or college-age children. For example, the Smiths consulted a lawyer to create their wills. Lawyers also can provide guidance for those with special requests, like the care of pets or gifts to a charity.
    Adults with fairly simple finances and personal lives who want everything to go to a spouse and then equally to their children should consider creating their own basic will. Up-to-date legal books that provide fill-in-the-blank forms, computer software or online programs make it easier. However, it's important to consult a lawyer if legal terms or wording is unfamiliar.
    Take a look at some of the do-it-yourself options for a basic will that can work whether you are single, married with (and without) children or in a domestic partnership. Many also include forms for a living will or power of attorney for health care.
    Quicken WillMaker uses an interview-style format to take users through the steps to set up a will. It matches "yes" or "no" answers to state laws and includes documents for living wills. The program comes on a CD and includes a printed handbook. WillMaker also allows individuals or couples to update the information. Also consider Kiplinger's WillPower.
    Take a look at some of the newcomers to the will-writing market, including MyLawyer.com, LegalZoom.com, BuildaWill.com and LegacyWriter.com. Most provide a simple online will form that professionals will then review for errors.
    There are a number of books that include fill-in-the blank forms and simple instructions for making wills.
    Generally, handwritten wills are not a good idea. There's a possibility of writing something that's ambiguous or contrary to your intent. However, a handwritten will can be useful in a temporary situation, if you are departing on a trip or entering the hospital for surgery. Keep in mind that a completed will is not legal until it has been dated and signed in the presence of two to three adult witnesses who won't inherit from the will's author.

When it comes to preparing a will, most folks are confused about where to begin. Here are a few common questions:
Q: Who needs a will?
A: Just about everybody who owns property needs a will. Spouse or partner must have separate wills.
Q: What does a will do?
A: A will serves three important functions. It explains who will receive the possessions in an estate, which can include stocks, bank accounts, cars, clothes, jewelry, business or real estate. Those possessions are left to beneficiaries, who can be family, friends and organizations, such as a favorite charity. A will also establishes a guardian --- the person to raise minor children if both parents die. And it names an executor, the person or institution that will pay off debts and taxes and make sure the balance of the estate goes to the beneficiaries.
Q: What if I die without a will?
A: Without your input, the state decides who will manage your property, raise your children and get your belongings. Generally, property goes to your spouse and children. If you have neither, it will go to your other closest relatives. If there is no will, significant others may receive nothing. If you're single and die without a will, there will be no way to donate part of your estate to your favorite charity.
Q: What do I need to prepare a will?
A: Before you meet with a lawyer or sit down at the computer, get organized. Make a list that includes major assets, such as your house, stocks, bank and retirement accounts, artwork, jewelry and cars; beneficiaries; an executor; and a guardian --- if you have minor children.
Q: What property or assets are not covered by a will?
A: Life insurance, retirement plans and jointly owned property, such as real estate, cars and bank accounts, are typically not covered by a will. Instead, money from life insurance policies and retirement plans, such as a 401(k) or individual retirement account, will go to people named as beneficiaries in the policy or plan. Property owned as "joint tenants with right of survivorship" will go to your co-owner or co-owners. Life insurance and property held in joint ownership are not substitutes for a will.
Q: Besides a will, what other key legal documents do I need?
A: As long as you are drafting a will, complete a living will. This document spells out the medical care you want if you can't speak for yourself.
A durable power of attorney is needed for health care issues. This document names a trusted person to make medical decisions if you are unable to do so.
Many lawyers prepare a living will and a durable power --- for an extra fee --- when they write a will. However, forms are available in legal books and software like Quicken WillMaker Plus. Area hospitals also have the living will form.
Q: Is there anything else to consider?
A: Make a master list of what you have and where important papers can be found. Be sure family members and those who need access to the documents, such as your executor, know where to find the list and documents. Here's what to include:

  • Names and phone numbers of your attorney, doctor, accountant or investment adviser. If you have made funeral, burial or cremation arrangements, include the name and numbers as well.
  • Insurance policies, credit card accounts, loans, and bank and investment accounts and account numbers.
  • Location of key documents, such as your will, powers of attorney and property deeds. Are they with your lawyer, executor, in a bank safe-deposit box, fireproof box or filing cabinet in your home?
  • Where should I keep my will? Keep it in a safe, accessible place, such as a fireproof box or safe. Be sure your executor (or the person handling your affairs) knows its location and can easily find it.
Sources: State Bar of Michigan, Nolo Press, American Bar Association
For more information about this topic: www.nolo.com (Nolo Press); www.abanet.org (American Bar Association); www.martindale.com (Martindale-Hubbell Law Directory).



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