Paying For It



  • IRS deduction for food costs
  • SS Info for Students (10/97)
  • SSI
  • Medicare vs Medicaid
  • Legal Help From Beth Sufian
  • Health Insurance for Small Businesses
  • Allsup Inc.
  • Medical Insurance When Leaving a Job
  • Medical Insurance When Leaving Home
  • Getting Insurance Company Approval for Treatment
  • Common Health Insurance Problems
  • HIPAA (10/97)
  • Manufacturer Subsidy of Pulmozyme
  • Prescription Drug Patient Assistance Prog. (5/97)
  • Hospital Indemnity Policies (10/97)
  • Buy in Bulk or Buy Non-Disposable Nebs (8/97)
  • Hill-Burton (9/97)
    • A Canadian Experience
    • From DHHS’s pages on Hill-Burton
    • More Info

    IRS deduction for food costs

    SS Info for Students (10/97)

    Social security (SS) has a special information package for young people who are disabled. Called “Graduating to Independence,” the materials should help parents as well as teachers help young people expand their horizons.

    A multi-media informational package, it includes written reading, software disks and a video. The package provides information that young people with disabilities can use to learn how SS and SSI can help them achieve their work goals.It explains how the “work incentives” in the disability programs can help by providing cash benefits while they attempt to work, help with medical bills, help with vocational rehabilitation and training, and help with expenses associated with working with disabilities.

    But more importantly, the information expands the horizons of young people about their futures.

    “Parents and teachers have told us that students are very surprised that they can work and still get help from Social Security,” said Georgia Hall, project coordinator. And there are success stories:

    Bob Vahey, who suffered complications from juvenile diabetes and CF, received SS disability benefits while earning a bachelor’s degree in social work and business administration. He received a trial period during which his earnings did not count against his benefits, an extended period of eligibility during which benefits resumed whenever his earnings fell below a certain point, and a continuation of Medicare coverage.

    Michael McIntyre has muscular dystrophy and has used a wheelchair since age 13. With the help of monthly SSI payments and educational assistance from the state vocational rehab service, he attended Hunter’s College and obtained a bachelor’s degree. Upon graduation, he used an SSI plan for achieving self-support (PASS) to purchase a car to get to and from work. The PASS permits him to deduct the funds spent for the car from his earnings that count against his benefits. He has also been able to deduct the cost of his wheelchair. And his Medicaid coverage continued during this period.

    Parents, teachers, or organizations wishing to order a copy of this free kit should contact:

    Graduating to Independence Social Security Administration 545 Altmeyer Building, 6401 Security BoulevardBaltimore Maryland, 21235

    FAX: (410) 966-8597



    SSI stands for Supplemental Security Income, not insurance. This is for disabled people who can’t work or have never worked. If you are disabled and have worked, you receive Social Security Disability, same as when you retire, the amount depends on the number of years you worked and the amount you paid in to the system. It is usually more than SSI, and you can’t receive both at once. One is mean based (SSI) and the other is earned.


    Medicare vs Medicaid

    Quoting from the Social Security Publication No. 05-10024 – “Medicare is our country’s basic health insurance program for people 65 or older and many people with disabilities….Medicaid is a health insurance program for people with low income and limited assets. It is usually run by state welfare or social service agencies. Some people qualify for one or the other; some qualify for both Medicare and Medicaid”.

    According to the Medicare office, albuterol when nebulized is covered by Medicare. That is because it must be nebulized, and paperwork is handled by the company contracted by Medicare to provide durable medical goods, i.e. the nebulizer itself. This company will differ from region to region. I have heard that Pulmozyme is also covered, perhaps for the same reason, but I am having that double-checked. So certain drugs in some cases are indeed covered.


    Legal Help From Beth Sufian

    Beth Sufian is a lawyer with cystic fibrosis who, with her husband, James Passamano, concentrate their practice in healthcare regulatory and reimbursement matters. The firm represents patients, practitioners and providers in actions against Medicaid, Medicare, Health Maintenance Organizations and Insurance companies to recover benefits and payments due under health plans. The firm represents individuals who have applied for Social Security Benefits and have had their applications denied. The firm represents individuals claiming Social Security Disability Insurance (SSDI) and who seek Medicare coverage. The firm also represents individuals seeking Supplemental Security Income (SSI) and Medicaid coverage. Disability insurance benefits may also be available under individual or employer based disability policies. The firm represents individuals who apply for short term (STD) and long term (LTD) disability benefit plans, and other claims under employee benefits plans. These other plans include healthcare benefits and pension benefits. The firm represents claimants from the initial application, through internal appeals and to district court. The firm frequently represents plaintiffs under regular insurance contracts and under ERISA qualified employee benefit plans. The firm also advises and represents health care providers and others in these and other areas (see the firm website for more information). Website: Ms Sufian also operates the CF Legal Information Hotline (1-800-622-0385) funded by a grant from Chiron Corporation. Individuals with CF and their families members and healthcare providers can contact the Hotline for information on the laws that protect people with CF and their families.

    ADDITIONAL CONTACT INFORMATION: Sufian & Passamano, L.L.P. 811 Rusk Avenue, Suite 712 Houston, Texas 77002 Telephone: 713-224-1166 Facsimile: 713-224-1161 E-mail: [email protected] [email protected]


    Health Insurance for Small Businesses

    The Small Business Service Bureau offers affordable health insurance with no medical questions and no pre-existing clauses to small businesses. The plans they offer are pretty good (e.g., $18 for a three month supply of Pulmozyme). Their phone number is 800-472-7199.

    Allsup Inc.

    is a fairly new company in our city, but it is a national company, with offices in California and ?. The guy that started it worked 20 years for Social Security and knows the ins and outs of the system. There are a couple of hundred people working there now, mostly with SS experience. The fee’s are the same as lawyers (that’s all SS allows), 25% of ‘retroactive’ benefits up to $4000, and no fee after you start drawing your regular benefits. Allsup’s number is 1-800-854-1418. I hope they can help you. They are given rave reviews here (Editors note: in California).


    (Advocating for Chronic Conditions, Entitlements and Social Services) is a free service offered by Quantum Health Resources. They will answer questions and advise about applying to Social Security Disability, SSI, Medicaid, Medicare, and COBRA. They have an excellent track record; call them at 1800-999-5433, ask for Peter, Brian or Rick.


    Medical Insurance When Leaving a Job

    COBRA is the Consolidated Omnibus Budget Reconciliation Act of 1985 (a Federal law). COBRA applies to employees of companies with 20 or more employees, whether they are fired, quit, or laid off. It requires companies to continue to provide various medical, mental health/substance abuse, dental, etc., insurance coverage after normal eligibility ends if you meet certain conditions. If coverage under COBRA continues, you must pay the entire cost of the insurance (no company contributions) plus a 2% administrative charge. Coverage periods range from 18 months to 36 months depending on the reason for which you qualify, one of which is to be a dependent who is not in school or is under age 25. There are other reasons, too. For example, if I was fired I could keep my coverage for a while. You have 60 days from when normal converge ends to decide if you want to continue under COBRA. Your coverage can terminate early if you don’t pay you premiums or if you get other group coverage (unless the new group coverage does not cover a pre-existing condition for which the COBRA coverage was paying).

    After this period, under the same COBRA law, your employer’s insurance carrier MUST offer you a “conversion” plan which MAY HAVE LESS GENEROUS BENEFITS (they must do this regardless of pre-existing conditions). So, if you leave your employment for any reason including being fired and are pretty sure you can get another job WITH BENEFITS within 18 months, you should be OK. As to whether pre-existing conditions would affect your insurance with a new employer, it varies but usually it won’t, especially with a large company. With a very small company, you may find they are reluctant to hire you because they could find their rates raised for their entire plan due to the increased costs to the insurer you would generate. Whether you could sue them under the Americans With Disabilities Act if you could prove this happened I don’t know.


    Medical Insurance When Leaving Home

    You might want to check (or press) your current insurance concerning (your child) going off when she graduates. Normally dependents can stay on until 21 or 23 if they are “full time” students. We are now going through this with our medical and automobile insurance since our son may not be able to stay “full time” next year. Although we haven’t gotten a final response, it appears that both insurance companies are going to let him stay on the insurance even if not a “full time” student.

    One other way that we have heard to get around it is to enroll at a junior college (pretty cheap) and then have to drop out for medical reasons. Apparently if this occurs they have a harder time kicking the child (dependent) off the insurance because it could be construed as discrimination under the ADA.


    Getting Insurance Company Approval for Treatment

    Gaining access to a CF specialist is often the first battle. You need to ask the CF specialist of your choice to become a provider (become an “in network” doctor) of your insurance company He can inquire about this through your insurance company provider relations dept. It is medically necessary for any CF patient to be seen not only by an MD with a pulmonology speciality, but also CF. The CFF may be able to help you with some literature to make this point clear.

    If your insurance company gives you a hard time go through the appeals process. Every company has an appeals process, get the necessary papers from them and fill them out and send. For more information and advice about handling insurance denials you may call the Cystic Fibrosis Alliance at 305-463-4440, during normal business hours Eastern standard time. This group is comprised of CF adults, caregivers, and parents of PWCF who wanted to be part of the solution for non discriminatory health care for CF patients. We educate our elected representatives, insurance case managers and whomever impacts CF health. We have seen the President of the U.S. and Hillary, we have hand delivered three of our packages of information to them. Please call if anyone has any questions, we are eager to assist.


    Common Health Insurance Problems

    Common Health Insurance Problems are:

  1. small, self-insured employer is told that if individual with pre-existing condition is hired, premiums will at least double for all employees OR that insuring company will not cover any p-e conditions period (therefore PWCF is not hired).
  2. PWCF can get coverage by HMO or PPO, but PWCF cannot attend CF center or usual MD and get those bills paid, as center and/or MD is not part of network.
  3. PWCF can get hired and covered, BUT has between 6 months and 2 YEARS of no coverage at all for the p-e condition (yes, this includes no payment for meds).
  4. PWCF has insurance, but due to rocky course and multiple hospitalizations, is reaching life-time cap, after which nobody will cover him/her ever again.
  5. PWCF was covered by large company policy, never had to fill out forms, left that job for another and now, two years later, was told that he owed first company for all costs as he had never told them he had CF. (This just happened to one of my patients; I told him to tell them to take it to court, as he was never asked whether he had p-e condition, CF was known to co-workers and supervisor, and he did nothing illegal. I think they were just trying to scare him — I hope so, anyway).

In short, good insurance is like gold and is equally rare.


HIPAA (10/97)

The Health Insurance Portability and Accountability Act of 1996 (HIPAA), Public Law 104-191, went into effect July 1, 1997. The Act is designed to protect health insurance coverage for workers and their families when they change or lose their jobs.

There are certain conditions in order for the HIPAA law to apply. A state insurance commissioner’s office said that: 1) the prexisting condition must have been covered by a previous policy 2) you must not have a lapse in coverage greater than 60 days and most importantly, 3) HIPAA only applies to group – not individual – plans. Anyway, this is what I was told. HIPAA is a federal, not state, law and since you’re dealing with a new regulation, you might want to call your state insurance regulatory office for details before suddenly changing any current policies though. For more information:

For the text of the law go to and select the database “Public Laws, 104th Congress”, then search on Public Law 104-191. You’ll get many hits; click on Public Law 104-191.


Manufacturer Subsidy of Pulmozyme

The Genentech Endowment for Cystic Fibrosis runs a program called the “Uninsured Patient Program” to assist patients who can not afford Pulmozyme therapy. From a letter of theirs, “The amount of assistance is based on financial, insurance coverage, and other pre-established criteria.” This program is very well administered, although a tad slow. Contact:

The Genentech Endowment for Cystic Fibrosis 4828 Parkway Plaza Blvd. Suite 120 Charlotte, NC 28217-1969

Tele: 1-800-297-5557


Prescription Drug Patient Assistance Prog. (5/97)

“1996 Dirctory of Prescription Drug Patient Assistance Programs”; published by Pharmaceutical Research and Manufacturers of America (PHRMA), 1100 Fifteenth Street, N.W., Washington, DC, 20005; 1995.

Lists company programs that provide drugs to physicians whose patients could not otherwise afford them. Programs are listed alphabetically by company. Each program entry includes information about how to make a request for assistance, what prescription medicins are covered, and basic eligibility criteria. Note that these programs serve the neediest patients, others need not apply. Obtain a copy by writting PHARMA (also see CYSTIC-L Lending Library).

Beware of offers to obtain these services for a fee (typically $5.00 per medicine). Ligitimate assistance programs require no fee.


Hospital Indemnity Policies (10/97)

Hospital indemnity policies pay policy holders a certain amount of money per day for every day they are in the hospital (e.g., $25, $50, $100, $250). Premiums and conditions vary depending on the company and the amount of the daily payment. Example: In May, 1997 it was reported that Physicians Mutual rates and premiums for individual coverage under 39 years old are as follows:


Cost Per Month

Pays Per Day














Typically companies have a one year waiting period on pre-existing illness (such as CF). Some companies require physicals, and/or require you to be a member of a certain covered group (association, customer group, etc.). The following companies are reported to have no physical, and to accept everybody. If you know of other companies offering plans, even with restrictions, please forward the information to Ron Trueworthy, 4608 North 2nd Road, Arlington, VA 22203-2627 or email [email protected]





In addition, these contacts have been reported:

Montgomery Wards Life Insurance Company PO Box 5051 Carol Stream, IL 60197


Providian Valley Forge, PA 19493 800-523-7900

(One report: “when I called Providian, I was told that you had to wait for their hospital indemnity plans to be offered, and that I would see a commercial on TV that would list the 800 number you would need to call”)

Mutual of Omaha Mutual of Omaha Plaza Omaha, NE 68175


Combined Insurance 5050 Broadway Chicago, IL 60640-3060


A comment: I tried to get indemnity insurance through AFLAC, but was told if I had more than two hospitalizations in the last two years, then I was ineligible. I do have Physicians Mutual coverage, and had no problems with it so far.


Buy in Bulk or Buy Non-Disposable Nebs (8/97)

One view: I have bought nebulizer cups buy the case. It is cheaper as I found out it cost me 2 years ago $79.00 for a case of 100. I just went to my home health center and had them order me a case and I paid out of pocket. If you are dealing with insurance they may not allow that many at a time. And some of you may have to have a perscription written to get them. I use to buy a few at a time and found out from our Physical therapist that you clould get them much cheaper if you buy by the case. I am almost out and will have to order again. My sisters little boy who has CF will use half the case and I the other half. Make sure you keep the package with the numbers of your favorite type cup.

I myself like the ones from the hospital. The ones with the straw in it never dry out well and I don’t feel you can sterilize those as well as the raindrop nebulizer. This type uses the reservoir on the other side of the “T’s” mouth piece. It is made by Puritan Bennett. They also last a long time too.

Another view: I would recommend using a PARI LC Jet Plus. They are reusable, up to six months, easily sterilized, and cost under $20 each. I get mine (because they are not covered by my insurance – check yours) from Allergy & Asthma Technology, Inc. They are $14.95, pediatric or adult masks are also available. Their phone number is 1-800-621-5545. They have a catalog of many appropriate items for those with CF. I recommend the Pari jet because of the small particle size it produces – among the very best of the compressed air driven nebulizers. The companion compressor, the Proneb, is available for $94.95, and I have had one for many years, very reliable and quiet. I don’t see the utility of using disposable nebulizers, which are generally not meant to be used over and over for weeks. You may have other reasons for preferring these nebs, but it seems that the costs would add up significantly over time.


Hill-Burton (9/97)

A Canadian Experience

Hill-Burton was originally designed to be a low interest loan program intended to promote the building of hospitals after WWII (the hospital system was in need of updating) and in exchange for the loan the hospitals had to offer care to indigents.

We do not have any such program as the Burton-Hill (Hill Burton) program in Canada so I only know what I went through in the intake assessment in the USA last week. I had an appointment with the financial aid counselor at Yale Hew Haven Hospital (YNHH) to examine alternative ways to pay my hospital bills. After going through all other avenues: SSI–I don’t consider myself a candidate presently Welfare–Not a resident of CT long enough and don’t need it Medicaid–Can’t be a FT student and get this Hill-Burton–all others who don’t fall into the above.

They said that: *You (I) have to have a chronic or congenital condition that places an undue financial burden on your ability to pay for your medical bills. *You (I) had a reasonable expectation that the care could be provided by the CF clinic but that not having insurance meant this was unavailable to me.

*You have been turned down for state medical insurance and have letters to prove this. *Hospitals which are not for profit and receive Federal funding MUST a lot monies for BH care.

Well…..after an hour assessment, I was told I should have been denied BUT they were going to award it to me as I fit their criteria and that within 1 week of arriving here, that I’d already been admitted for a tune up meant that this (CF) was not just going to go away. So the paper work was submitted and I have this paper to carry with me that says I am a BH recipient and that alone will cover all admissions and out patient care.

I think it helped that in New Haven, there are 2 hospitals to go to and only one has a CF center. It meant that one of them HAD to provide care for BH patients.

From DHHS’s pages on Hill-Burton

The Division of Facilities Compliance and Recovery manages the Hill-Burton program, a program to assure that obligated facilities provide free or reduced cost medical services to uninsured and underinsured persons who meet eligibility criteria. Obligated facilities providing these services must maintain public or nonprofit status for a period of 20 years.

Hill Burton FAQ

Question: What services are covered?

Each facility chooses which services it will provide at no or reduced cost. Services fully covered by a third-party insurance or a government program (e.g., Medicare and Medicaid) are not eligible for Hill-Burton coverage. However, Hill-Burton may cover services not covered by the government programs. Pharmacy and private physician fees are not covered by this program. However, services provided by physicians hired by the facility may be covered.

Question: Can I receive Hill-Burton assistance to cover my Medicare deductible and coinsurance amounts or Medicaid co-pay and spenddown amounts?

Medicare deductible and coinsurance amounts are not eligible under the program. However, Medicaid co-payment amounts are eligible, except in a long-term care facility. In addition, Medicaid spenddown amounts (the liability a patient must incur before being eligible for Medicaid) are eligible in all Hill-Burton facilities.

Question: Where can I get Hill-Burton free or reduced cost care?

At the nearest Hill-Burton facility.

Check the following netsite for a list of obligated facilities:

Question: Who can receive free care?

Eligibility is based on a person’s family size and income. Income is calculated based on your income for the last year or your last 3 month’s income times 4, whichever is less. You may qualify if your income falls within the poverty guidelines. You may also qualify for free or reduced cost care at some facilities if your income is up to double (or triple for nursing home services) the poverty guidelines.

Question: What does income include?

Gross income (before taxes), interest/dividends earned, and child support payments are examples of income. Assets, food stamps, gifts, loans or one-time insurance payments are not income when considering eligibility. For self-employed people, income is determined after business deductions.

Question: When can I apply for Hill-Burton assistance?

You may apply for Hill-Burton assistance at any time, before or after you receive care.

Question: Is United States citizenship required for Hill-Burton eligibility?

No. However, s/he must have lived in the U. S. for at least 3 months.

Question: Can I apply for Hill-Burton assistance on behalf of an uninsured relative or friend?

Yes. You must be able to provide information regarding the patient’s family size and income.

Question: Do I have to wait until I am sick before I can apply for Hill-Burton assistance?

Hill-Burton is not health insurance. To apply for Hill-Burton you must have received services or know you will require a service in the near future.

Question: What are some reasons I could be denied Hill-Burton care?

The facility may deny your request if: If the facility has given out its required amount of free care The services you requested or received are not covered in the facility’s allocation plan The services you requested or received are to be paid by Medicare/Medicaid, insurance or other financial assistance program The facility asks you to first apply for Medicaid/Medicare or a financial assistance program, and you do not cooperate. Or provide the facility with proof of income.

Question: What can I do if I have a complaint against a Hill-Burton facility?

Complaints must be filed at the HRSA Field Office responsible for the particular State involved. You must include: 1) the name and address of the person making the complaint; 2) the name and location of the facility; and 3) a statement of the actions that the complainant considers to violate the Hill-Burton program.

Question: What other service obligation does a Hill-Burton facility have?

Under the community service assurance, Hill-Burton facilities are responsible for providing emergency treatment and for treating all persons residing in the service area, regardless of race, color, national origin, creed or Medicare or Medicaid status. This assurance is in effect for the life of the facility. If you feel you were unfairly denied services or discriminated against you should contact the Office for Civil Rights (OCR) at 1-800-942-5577.

Queston: How do I apply for free care?

You should contact the Admissions, Business or Patient Accounts Office at a Hill-Burton obligated facility to find out if you qualify for assistance and whether or not a facility provides the specific services needed.

More Info

As listed in The American Medical Association Encyclopedia of Medicine, p 1092

“Hill-Burton Hospital Free Care (800) 638-0742 (800) 492-0359 in Maryland

Provides a recording on hospitals and other health facilities participating in the Hill-Burton Hospital Free Care Program. A service of the Bureau of Resources Development, U.S. Department of Health and Human Services.