THE CURE?

Note:We must be very cautiously optimistic about this news.The data has not been published yet and the report is lacking in real information . Furthermore, there are problems with the study that include, but are not limited to, these facts:

  1. This study is only done with 42 patients.
  2. They say that they have both HCV and HBV patients but do not say how many of each.
  3. They say that the duration of the disease was shortened considerably. By what measurement, assumption, etc.?
  4. Relapses were high in the HCV group.

This study will be published in the Anticancer Research in March, so we will have a better opportunity to review it then.

Darlene

Hungarian, U.S. Doctors Claim New Hepatitis Cure.
By Duncan Shiels

BUDAPEST, Feb 18 (Reuters) - A group of Hungarian and U.S. scientists say they have found a cure for hepatitis B and C which has no side effects and costs less than a fifth of current methods of treatment.

Results of phase two tests of the treatment using a naturally occurring virus developed by Laszlo Csatary of the United Cancer Research Institute in Alexandria, Virginia, are to be published in the March edition of the international Journal Anticancer Research.

"This is the first actual cure for hepatitis B and C,'' one of Csatary's team, Tibor Bakacs of Hungary's Institute of Oncology told, Reuters on Wednesday. "This virus is non-pathogenic to humans, it produces no illness and a course of treatment costs a fraction of other treatments.''

Infections of hepatitis B (HBV) reached epidemic proportions in the 1970s but the number of cases has been reduced in recent years through international preventive vaccination programmes.

Hepatitis C (HCV), which first appeared in 1989, is now recognised as a major public health problem worldwide. Between one to two percent of the population of developed countries are affected and infection rates run as high as 15 percent in parts of Africa.

Current treatment of HCV, which becomes persistent in about 85 percent of its victims, involves the use of the drug alpha interferon, a relatively expensive therapy.

Researchers at the Mayo Clinic in Rochester, New York concluded, in results published in November, that a six-month course of alpha interferon therapy cost an average of $4,000 per quality-adjusted life-year gained.

Bakacs said a full course with the new virus, MTH-68/B, an attenuated form of Bursal Disease Virus (BDV), cost a total $400 to $800 for six months.

In terms of treatment, 25 to 30 percent of patients may respond to a prolonged course of alpha interferon (12 to 18 months) but the treatment produces some harmful side-effects.

According to Csatary's paper, 42 HBV and HCV patients were treated with the BDV virus and another 42 with conventional therapy in tests carried out at Budapest's Szent Laszlo Hospital.

In the case of HBV five percent of the test group relapsed, compared to nine percent on the control group, while for HCV sufferers the corresponding figures were 32 percent and 79 percent.

The duration of the disease was also considerably shortened, it said.

Bakacs said the findings came at a time when current vaccination programmes against hepatitis B were encountering difficulties. "There are 70 countries currently vaccinating but they have discovered escapee mutants. We now need a treatment.'' he said.

He added that with such a small sample further research was needed but there were strong indications that the results would be confirmed in larger-scale tests.

"You cannot make sufficiently strong statistics on 40 people but it is the first evidence of the principle that this can be done,'' he said. "From here on it is just a question of bigger numbers.''

SOURCE: REUTERS News Service

Additonal note from the Toronto office:

[This treatment] is only in second phase trials. Phase three randomized control trials will take a minimum of five years and will involve thousands of patients before the treatment can be licensed and approved by the FDA in the U.S. and equivalent licensing bodies around the world.


TRAVEL COST COMPENSATION: About TAP.

The Travel Assistance Program is sponsored by the BC Ministry of Health and Ministry Responsible for Seniors.

TAP was created to help residents of BC to access health care services that they cannot obtain unless they travel.

In other words, if you have to travel to get access to specialists in Vancouver, for example, the TAP program will pay for, or give you discounts for your travel costs, such as ferry fares, for you, your vehicle, and for an escort, if one is needed.

Please ask your doctor for a form to complete. You also need to contact MSP to verify your eligibility and to receive a confirmation number before you travel. (Phone number below)

You are eligible if you are a BC resident enrolled in the Medical Services Plan, and your travel expenses aren't covered by other insurance policies. There are regulations such as arriving at the ferry, for example, one hour before departure.

This program doesn't include meals, accommodations, car expenses, or local transportation. You must make your own travel and accommodation arrangements. You may obtain more information by calling MSP at 1-800-661-2668 from 8:30 am to 4:30 PM, Monday through Friday. You may also call 387-8277 in Victoria.


Hepatitis victims in line for million

Ottawa could act without provinces

Wednesday, February 4, 1998 By Anne Mcilroy The Globe and Mail

OTTAWA - The federal government is willing to contribute at least $300-million to compensate Canadians who were infected with hepatitis C through tainted blood.

But negotiations with the provinces on a joint assistance package for the forgotten victims of the blood tragedy are making little progress.

Some provinces are offering little or no cash, arguing that they already have to shoulder the cost of looking after the thousands who face a life of illness because the blood system failed them.

Sources familiar with the secret negotiations say the hard-line position that Manitoba and New Brunswick presented at the meeting of federal and provincial deputy ministers of health last week in Vancouver could be a negotiating tactic. But if it isn't, it could set the stage for a confrontation with the federal government that would see Ottawa acting alone in offering a settlement for victims infected with the sometimes-deadly disease.

Cyrus Reporter, spokesman for federal Health Minister Allan Rock, said yesterday the government still hopes a joint package can be worked out because that would better for the victims. Spokesmen for the New Brunswick and Manitoba health ministers did not want to comment.

Symptoms of hepatitis C range from mild discomfort and fatigue to cirrhosis or liver cancer. As many as one in five people who are infected will likely die, and there is no vaccine and no cure.

Tens of thousands of Canadians are believed to have been infected with the hepatitis C virus through contaminated blood and blood products, including but not limited to the 28,600 who contracted the disease between 1986 and 1990. Mr. Justice Horace Krever's final report into the tainted blood tragedy of the 1980s blamed the federal and provincial governments and the Red Cross. He said a test that was used in the U.S. could have prevented 85 per cent of those people from getting the disease.

The pressure is on for the federal and provincial governments to agree on a package because victims have launched lawsuits worth more than $3-billion in total. The idea is that the victims would get money in exchange for signing a waiver promising not to proceed with their suits.

In the past, both the provinces and Ottawa have resisted compensating people infected with hepatitis C through tainted blood, fearing it would cost too much. But the potential civil liability, coupled with Judge Krever's recommendation that all victims of the tragedy be compensated, has changed the federal position.

A government source said Ottawa is willing to offer anywhere from $300-million to $600-million or more in compensation, depending on how many victims are included in the offer.A key unresolved issue in the talks is whether the compensation package should be offered to more than the 28,600 who were infected between 1986 and 1990. (Roughly the same number were infected before 1986.)

They also can't agree on whether to compensate the so-called secondarily-infected. The federal government wants to include the spouses and children of victims of the tainted blood fiasco who were made ill through contact with loved ones.

Ottawa would prefer to make the offer before the end of the fiscal year. The government is currently cramming in all sorts of spending before the next budget to reduce the surplus. Finance Minister Paul Martin is expected to announce. The government wants a smaller surplus to prevent pressure to spend more or cut taxes.

But one senior government official said the money would still be available next year."This is not a fiscal issue."

But some of the provinces do not appear to be in any kind of hurry.

Sources say the provinces reviewed U.S. scientific papers on the costs of providing health care to people infected with hepatitis C and argue that it will cost them, on average, about $49,000 a person each year to care for them. They argue that the cost they will bear of blood victims' basic health care should account for all or most of their contribution to a compensation package.

Because the provinces are responsible for health care and have no choice but to look after the needs of tainted-blood victims, they argue that they already bear a significant financial burden.

But it seems unlikely that the federal government will accept this idea. Ottawa believes that the provincial governments have a duty of fairness to provide compensation.

Groups representing victims say that they believe the federal government is keen to reach a deal, and that Saskatchewan and Quebec are also pushing for a settlement. They say Ontario, New Brunswick and Manitoba are the most hard line. The rest of the provinces appear to be hanging back, watching to see what will happen. They say it may soon be time for the federal government to make an offer on its own.


PRELIMINARY HEPATITIS C AND HEEL PAIN SURVEY

Tammy M. Gracen, B.Sc., D.P.M. Podiatric Medicine & Surgery

1. How long have you had hepatitis C?

2. What is your age?

3. Gender: Male Female

4. List any other medical problems:

5. List all medications that you are currently taking:

6. Do you currently use...? Alcohol -yes - no Drugs - yes - no If yes which drugs?

7. Have you ever used alcohol or drugs? Alcohol -yes - no Drugs - yes - no If yes, please explain

8. Do you experience muscle fatigue? (Please explain)

9. Do you experience muscle or tendon pain?(Where and for how long)

0. Do you experience joint pain?(Where and for how long)

11. Did you experience the symptoms in questions 8, 9, and 10 prior to being diagnosed with hepatitis C?

12. Do you have heel pain?- yes - no If yes, please continue A. One or both heels?

B. How long have you had the symptoms?

C. Do you experience pain with activity?

D. When is pain the worst?

E. What aggravates the pain?

F. What makes the pain better?

G. Have you had any treatment for this? (If yes, please explain the treatment and what worked and what didn't work

H. Did you ever experience heel pain prior to your diagnosis with hepatitis C?

Please send your completed survey to:

Dr. Tammy M. Gracen, Broadway Medical Building,
#530-943 West Broadway Vancouver, BC V5Z 4E1
Tel: (604) 734-7331 or Fax 737-1146

Reminder: Any change of address, phone number or postal code, please let your phone contact (in Victoria) or your chapter secretary know ASAP HeCSC Victoria Tel. (250) 388-4311 Email: hepcvic@pacificcoast.net


Hepatitis Victims Issue Ultimatum

A lawyer for BC claimants says the BC and Federal government face litigation warfare unless tainted-blood settlement negotiations start this month.

By Petti Fong Vancouver Sun

The Vancouver lawyer representing B.C. claimants who contacted hepatitis C through tainted blood gave the provincial and federal governments an ultimatum Tuesday, saying they'll face litigation warfare unless negotiations begin this month on a settlement.

"I hope to hear from them by mid February. If we don't, we just go to litigation warfare," warns J.J. Camp, who represents 1500 claimants. "We have the financial muscle and the guts to do it."

On Tuesday, some details of the plaintiff's demands were released for the first time, nearly two months after the proposed settlement was sent to provincial and federal health ministries.

Camp said there will be coordinated effort between lawyers representing claimants in B.C., Saskatchewan, Alberta and Ontario to put increasing pressure on all governments. Part of that campaign will include press conferences to allow the victims to detail the emotional and physical costs of the potentially life-threatening virus.

The proposal written by Camp and the basis for a common settlement for victims in other provinces, does not give a specific monetary demand.

Under the plan, individuals with hepatitis C would become eligible for compensation by proving they received a transfusion and that they have not engaged in high-risk activity, such as intravenous drug use. An initial payment would be made to all victims, even if they had not developed symptoms.

Claimants who have developed symptoms would then receive further compensation.

Those who have not developed symptoms would have the right to defer the assessment of damages and a fund would be established to cover these claims at a future date.

In November, Justice Horace Krever recommended a no-fault compensation system for anyone who contracted a disease through the blood system.

B.C. Health Minister Joy MacPhail couldnot be reached for comment on Tuesday.


NEED HELP WITH INTERFERON COSTS?

I have had a great deal of difficulty lately trying to continue my Interferon treatment without interruption. I ran out of money for interferon and spied a 1-800 phone number in one of the newsletters a couple of issues ago. But it was the wrong number. The number HepC BC. bull published was 1-800-521-7157, which was an American number for CARE. They could not provide me with the Canadian CARE 1-800 number! Wow... now isn't that a lack of international cooperation by a huge multinational pharmaceutical?

So around Dec.15, '97, I phoned my Contract Research Organization, VIRIDAE, and requested help. A week later I was told to phone 1-800-363-3422. That was CARE in Montreal. No answer, but an answering service kicked in. Callers should enter local 2000 and punch in the number "0" when prompted. It took them a week to call me.

With the ice storm the following week, the phone lines were dead. Then, due to the involvement with Pharmacare and pharmaceutical companies and doctors and the pharmacist, another two-week delay transpired. I ended up dealing with:

Ms. Sonja Turner, Information Officer, C.A.R.E. (with Schering in Montreal).
Tel. #:1-800-363-3422, Local 2000, then punch in "0" when prompted. Fax :1-888-260-9490

I eventually got subsidized by CARE once they assessed various faxed financial documents and personal medical details. The whole process was tantamount to a crazy roller-coaster ride. VIRIDAE had the candidness to suggest that I had to track down the details and figure out where any delays mysteriously lurked. I have the energy and zeal. A sicker person wouldn't. HeCSC might well arrange for a contact person for those facing personal financial bankruptcy that need help in sourcing out subsidized Hep C medication. All the phone calls and faxes and follow-ups practically amounted to a part time job! It was very exasperating.

In the end it was only the kindness of the pharmacist that gave me a week's worth of interferon while I waited for the final approval. A person shouldn't have to depend on the kindness of strangers. There is enough loss of dignity with this disease.

Adriaan Von Meyenfeld