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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. Specifically, articles 1, 2, and 7 under the "Professional Information" topic page.
Concerns about the insurance coverage can become quite important, especially for costs associated with more extensive possible treatments such as a stem cell transplant. John Helwig was one of the first to
receive this treatment, so he pioneered the experience with the insurance companies. He provides guidance and suggestions at his personal web site.
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
800-532-5274
www.patientadvocate.org
Medicare
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 selected 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
Cost
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 believe that a diagnosis of amyloidosis should be confirmed
at a center of expertise, 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.
The NPA TH Helpline is operated my Mercy Medical Airlift in support of Angel Flight America (which does 90% of long-distance charitable medical air transportation in the U.S.), Joe's House, the National Association of Hospital Hospitality Houses and the American Cancer Society.
Mercy Medical Airlift National Patient Travel Center
4620 Haygood Road, Suite 1
Virginia Beach, Virginia 23455
mercvmedical@erols.com
Lodging
In Boston, consider the following:
- The Family Inn - 70 Sewall Avenue, Brookline. At last report, their rates were $10 per night plus $2 for each additional person, up to a total of three persons. They provide laundry facilities including soap, food to eat, like donuts and coffee and such and juice are
donated for the family, and each family has there own space on the shelves and in the refrigerator. It is a nice converted home, 10 bedrooms and 7 bathrooms, the people there are great. Phone 617-566-3430 for updated information on rates and availability.
- Most people prefer short-term furnished apartments, totally accessorized, as well as bed-and-breakfast situations that are available through the AAA Corporate Rentals, Boston Short Term Rentals and Bed & Breakfast Agency of Boston (800-248-9262). They have units in the Back Bay, Beacon Hill, South End and Waterfront areas and some within 6 blocks of the hospital. There are plenty of restaurants everywhere. Typically, units rent
from about $125 to $150/night or between $2,000 and $4,000 per month. There may be less expensive ones, you just need to talk it through with them. One important consideration is that many are walk up units. That can be a problem during the treatment, so you want to get
a first floor unit. Regarding transportation, BUMC might provide pickup and return service. But, the closer you are staying to the medical center makes it more convenient for the caregiver and others when they need the apartment for whatever reason.
- Some patients and caregivers have chosen to stay at The Greenhouse Apartments. These are short-term furnished apartments, totally accessorized. All that stayed there were very pleased.
You can phone them at 1-800-330-4020.
· Quality Inn (formerly Susse Chalet Inn and Howard Johnson) at
800 Morrissey Blvd.
Dorchester, MA 02122
617-287-9200 or 800-695-8284
Ask for medical rate of $79.00/night. You have to do your reservation directly with the hotel (617-287-9200). They run a shuttle to the hospital on the hour. It is clean and does daily housekeeping. This helpful because there are many days you
won’t want to do much of anything. Ask for the third (3rd) floor as they are the best of the rooms available. If you get an even numbered room, you get a view of the bay. Make sure they understand you need a refer/microwave unit and two beds. The largest problem is the bathroom
isn't very large, but suffices. There is also an elevator so you don't have to deal with stairs.
The Quality Inn does have a shuttle that takes you to and from the hospital anytime you need it. Their shuttle (free) also will take you to the JFK/U Mass red line ($1.25 token) stop (The "T" or subway line). One can get about the city quite well
with public transportation. There is a grocery store within walking distance and another larger 'super store' directly on a bus line ($0.90 in exact change) that connects to the red line and the shuttle.
- Buckingham Business Apartments offers short term rentals. Apartments are furnished and located on Commonwealth Avenue in the heart of Boston's Back
Bay. The suites are designed to offer the Boston visitor a temporary home away from home. Rates include all utilities, basic cable TV, local phone service, wireless Internet access, and light maid service.
Buckingham Business Apartments
240 Commonwealth Ave.
Boston, MA 02116
Tel: 617-536-5510
Fax: 617-536-4217
E-mail: info@buckinghambostonapartments.com
www.buckinghambostonapartments.com
- We can also suggest the Best Western Roundhouse Suites 617.989.1000 or 1-888-HOTELMA,
891 Massachusetts Ave. Boston, MA 02118
The comments we received are that the rooms are new, clean, large, and 2-3 blocks from the clinic. They also have free shuttle service to/from the clinic, as well as, to/from Backbay for meals, shopping and entertainment. The BUMC rate is $110/nite, but explain why you are going
to be there and you can possibly get a better room rate. The rate is a little more expensive than the Howard Johnson’s but includes free continental breakfast in the morning and free transportation to/from Logan.
- For more information on patient and family accommodations in the Boston area, contact the Boston Medical Center social work office at 617-638-6840.
In Manhattan (for Memorial Sloan-Kettering):
- Spartan accommodations in the youth-hostel style, with shared kitchen and bath facilities, less than a block from Memorial Sloan-Kettering Cancer Center, are available for $10 per night at Bethany Memorial Reformed Church. Prospective guests must be referred
by hospital social workers before their reservation can be confirmed. For updated information on rates and availability, phone the church office at 212-734-0828.
- More comfortable accommodations two short blocks north of MSK can be had at Helmsley Medical Tower, 1320 York Avenue, 800-468-6937. Rates start at $150 per night for an efficiency apartment with a small but complete kitchen.
- For more information on patient and family accommodations in the NYC area, contact the MSKCC social services office at 212-639-7020. More details can be found at http://www.mskcc.org/mskcc/html/5364.cfm
In Rochester, MN (Mayo Clinic):
- For more complete information on accommodations in Rochester, phone the Mayo Clinic social services office at 507-284-2131
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.ssa.gov/applyfordisability/adult.htm.
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
The Patient Access Network Foundation is a non-profit 501(c)(3) organization dedicated to supporting the needs of patients that cannot access the treatments they need due to out-of-pocket health care costs. You can find out more by calling 1.866.316.PANF (7263) or email to contact@patientaccessnetwork.org. More information can be found on the on the internet at www.patientaccessnetwork.org.
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.
OncoLink
Cancer Supportive Care
NeedyMeds.com
RxAssist
Pharmapath
Patient Support Solutions at www.PSSprogram.com (this program is operated by Celgene provider of drugs such as Thalidomide or Revlimid)
Also, information about free or almost free prescription medications is available in a 48-page booklet published by the Cost Containment Research Institute in Washington, D.C. It contains information about getting free or low-cost prescriptions. This pamphlet costs $5. For more information,
go to this web site: http://www.institutedc.org/.
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 Partnership for Caring (see the ADVANCE DIRECTIVES section at http://www.partnershipforcaring.org/HomePage/).”
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.
WILLS
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:
- ESTATE LAWYERS
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.
Cost: $75 an hour to more than $300 an hour, depending on the complexity of the will and the time needed to prepare it. Add about $50 to $150 per person for an additional living will and power of attorney for health care.
- DO-IT-YOURSELF WILLS
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.
- SOFTWARE PROGRAMS
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.
- BUILD-A-WILL WEB SITES
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.
- HOW-TO BOOKS
There are a number of books that include fill-in-the blank forms and simple instructions for making wills. For example, "Nolo's Simple Will Book" by Denis Clifford includes information and instructions in plain English, not legalese. The paperback also contains preprinted
forms and a CD to tackle various family situations. Always make sure the books you consult are up-to-date. Check for the most recent edition.
- WRITE YOUR OWN WILL
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
ON THE WEB
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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