A Peek at AIL (Italy)

For the last 20 years, Maria Rita Grattarola has been involved with the Italian Association against leukemia-lymphoma and myeloma (AIL).

Prior to joining AIL, Maria Rita was a business teacher. Initially, she volunteered for AIL and over the 20 years Maria Rita has been involved with the organisation, she has worked in many different areas.

For the last 10 years, she’s been mostly responsible for organising patient seminars and patient groups.

Formed in 1969, AIL’s main objectives are to promote research and provide housing assistance, homecare and funding support for those in need. AIL is connected with GIMEMA (the Italian Group for Haematological Disease in Adults/Gruppo Italiano Malattie EMatologiche dell'Adulto) which undertakes research on behalf of AIL. AIL provides GIMEMA with funding, a non-profit research organisation comprising 150 haematology centres in Italy.

AIL’s national headquarters are in Rome but AIL has 82 branches spread throughout Italy.

“While we have a common logo, the same goals and national campaigns, we each do our own fundraising within our own territory,” said Maria Rita.

Importance of Volunteers

AIL has a large volunteer base of almost 22,000 people.

“Volunteers are our strength. They work in hospitals at the welcome desk. Many will help with fundraising campaigns such as Uova di Pasqua (Easter Eggs) and Stelle di Natale (Poinsettias Day); some will help in the houses AIL has for patients while others help with administrative tasks,” she said.

In addition to the volunteers, AIL’s national headquarters has a full-time staff of 25 people.

Patient Seminars

When it comes to putting the patient seminars together, Maria Rita has two colleagues to help her.

“In 2014, AIL will hold 14 patient seminars throughout Italy. These seminars focus on all haematological malignancies,” she said.

The seminars take three to four months to organise and entail AIL’s national headquarters contacting the branch in the city where the seminar is being planned to determine the location, catering and materials needed. AIL’s national headquarters has a medical team to choose the speakers.

“On average 100 people attend the seminars although as many as 250 can attend, depending on the topic,” she said.

Patient Groups

AIL has two patient groups: one for chronic myeloid leukaemia (CML) that was constituted about four years ago and the second one for myeloproliferative diseases that are pH negative that was formed in January 2014.

During the year people do not meet in person but connect through an online forum. If there are patients with a particular need, AIL looks for a specialist who can talk about it. Each group does have its own medical team.

AIL also organises three patient seminars a year for both of the patient groups during which 10 to 12 haematologists are available to answer questions.

“For example, we had several questions about paediatric CML which is quite uncommon. AIL looked for a specialist who could talk about the disease,” said Maria Rita.

Housing Assistance for Patients

Travelling to receive treatment can be an issue not just for the patient but also the family.

“A mother with a baby needing a stem cell transplant may not be able to travel back and forth and may not have the financial means so accommodation would be provided,” she said.

Depending on the patient’s illness will determine how long a patient can stay in the accommodation provided by AIL. A committee determines who is eligible for accommodation.

Of the 82 AIL branches, 33 can provide housing.

While there are different types of housing, all patients will have their own bathroom facilities but share areas such as the kitchen and garden.

“We try to maintain the privacy of the family but also provide an opportunity where patients can connect with others,” she said.

AIL pays for the accommodation but patients prepare their own food.

In addition to providing these services to Italians with a blood cancer, AIL also provides assistance to immigrants.

“We have a lot of immigrants coming for treatment, especially from Eastern Europe and North Africa and AIL offers them support,” said Maria Rita.

AIL’s Home Healthcare Programme

The home healthcare programme provided by 44 branches allows patients to be followed by a healthcare team in their own home rather than remaining in hospital.

“Patients feel better if taken care of in their own home and it also reduces the cost of a hospital stay,” said Maria Rita.

The home healthcare team will include a haematologist, nurse, social workers and psychosocial volunteers. This team is able to perform transfusions and needed treatments. Key to the success of a patient staying at home is ensuring that the caregiver can take on the role and that communication is maintained between the home healthcare team and the patient.

Fundraising Events

For more than 30 years, AIL has raised money through Stelle di Natale (Poinsettia Day). Held for three days during the first week of December, the approximately 4,000 public squares in Italy are turned red as they are filled with poinsettias for sale. After the first week of fundraising, poinsettias continue to be sold in schools and churches.

“Between 700,000 and 800,000 plants are sold and the money raised is split between research and patient assistance,” said Maria Rita.

One of the many squares selling poinsettias

The other main fundraising event is Le Uova di Pasqua (Easter Eggs). Started in 1994 to see if it would be an effective way to raise awareness about blood cancers, it soon grew from selling a few thousand chocolate eggs to several hundred thousand chocolate eggs. Nearly all provincial capitals and several thousand squares participate in the event.

National Day Against Leukaemia, Lymphoma and Myeloma

This annual event is held on June 21, the first day of summer. In preparation, about one month before the event, AIL’s communications team reaches out to the public via television, radio and AIL’s website to let the public know the event is approaching.

“On this day all branches organise an event. Each year at AIL’s national headquarters a toll-free number will be set up and people can call in throughout the day and have their questions answered by eight of the most important haematologists in Italy,” said Maria Rita.

In addition to the national day, for the last six years, AIL has arranged a sailing event where a boat sails down either the eastern or western side of Italy.

“This year the boat will sail on the Adriatic Sea leaving from Trieste and stopping at various ports,” she said.

The sailing event is held over a 15-day period making between eight to 10 stops. Up to 30 people can board the boat for a one-day sailing excursion.

“Patients are invited to go on the boat where there are doctors and nurses and where there is no difference between people and they can relax and enjoy themselves,” said Maria Rita.

What is key in all of AIL’s efforts is to make sure people don’t feel alone and that there is someone replying to their requests for help and assisting them in becoming more aware of their disease.

“A patient who is more aware asks more questions,” said Maria Rita.

Many thanks to Maria Rita and AIL for taking such great care of patients with blood cancers as well as their families.

June 30, 2014

 

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